Sunday Sessions - Breaking ALL of the rules today

But that's ok.  Thea, the sweetheart, told me I could. She's got her Sunday Sessions focused on dance tracks, get up and move songs. 

I've still got this freaking headaches (I think we're at 8 weeks with no respite?) and I can't face even thinking about bouncy songs. 

I need cool, calm and soothing.  And someone on Twitter earlier this week was talking about my favourite album of all time, and I just knew that that's where my Sunday Sessions was going to be this week.

My favourite album of all time is Carole King's Tapestry.  I know I'm not alone - Rolling Stone ranked this album #36 Best albums of all time.  I'd have liked to see it a little higher up, but still. 

I love it.  I love it a thousand ways. I adore it. It is my childhood, my motherhood, my womanhood, my teenage years...there are so many memories and feelings attatched to this album, I barely know where to begin.

This image is one of the defining images of my childhood and my love of music, passed down to my sisters and I by my equally passionate mother.

Here is one of my favourite songs from it - the title track -Tapestry.

Accompanying Carole on this track is a man who encouraged her to write and perform her own music, one of my other favourite musicians ever - James Taylor.  Here's my favourite James Taylor song.

I'm not even sure about finding a new song.  I'm just rebelling, and going all James and Carole today. :D

I can't tell you how I love this song.  I can feel my mother and my sisters when I hear this.  Back when things were good. When I loved them all more than I could imagine loving anything or anyone else.  The four of us (my Dad and brother weren't quite as into music as the 4 of us were), singing away in the car, in the kitchen, anywhere. Some of my most treasured memories.

So. Why don't you go over to Thea's blog and link up your Sunday favourites?

So, it's probably time for an eye update

And while most of you are off at Blogopolis (sob) is probably a great time to do it, as you'll all be too hung over to get to this for a few days and I can hide it behind a Sunday Sessions post. :)

Many of you will know I had follow up appointments with my Eye Specialists last week.  I'd already seen 3 Opthamologists (all from the same clinics - there are 3, and the 6 or 7 doctors travel between the 3), and all had differing opinions about what had caused the Branch Retinal Vein Occlusion and therefore the massive Cystoid Macular Oedema.

The first felt certain that it was a condition caused by the high dose steroids I have been on for the past few months.  His advice was to stop taking them.

The second felt that (due to the fact that this has happened 3 times now, each time immediately after cessation of steroid treatment and has resolved after restarting steroids) that I should actually be placed on an increased dose of steroids. 

The third felt this was simply a case of diabetic retinopathy leading to BRVO and Macular Oedema (though he admitted it was a severe case, especially considering my near perfect diabetes levels of the past few months).

So, as you know, I'd seen my Rheumatologist finally and she felt confident that I did not have an auto-immune disease or vasculitis, and certainly not the Lupus that my GP and I were expecting.  She has put my illness down to 3 things.  1)Fibromyaglia (Which I already knew I have.  I was diagnosed 13 years ago); 2)Diabetes and 3) The Prednisone making me sicker. She also (rightly) pointed out that my weight is a contributing factor and she and my GP are at this point wanting me to consider some kind of surgery - the recommendation is for a Gastric Sleeve operation. More on that another day, I guess.

Her opinion, (and this is partly my fault, as I had not been clear) is that since I had only reported a 50% improvement in pain since the Pred started, that it wasn't autoimmune. Because the doses I'm on should have eliminated any joint pain.

Except. (And I didn't realise that we had gotten our wires crossed until I read the letter she sent my GP). My joint pain IS almost completely gone while on Pred, with the exception of my hip (which was dislocated a few years ago) and my hands in the worst of the winter. The rest of the main is muscle - easily explained by the FM.

So, while the blood tests for Lupus are negative, I'm not entirely sure her basis for ruling out AI is entirely sound, considering we got our wires crossed a little there.

The thing they were in agreement about was that we needed to get the Opthamologists to come to a consensus.  I had gone from 2 years ago: (my last diabetic check) perfect vision in my right eye (in fact, better than 20/20 or 6/6 as it is now known - I think it was 20/10 or 3/6) and 6/36 in my left (that eye has been the epitome of lazy since I was 8 and the opthamologist told my parents I was faking it.  A whooooole other story!) and no signs of diabetic changes, to what I have now.

Which is Count Fingers in my left eye (could not see even the great big fat "E" and 6/36 in my right. Not quite legally blind, but pretty woeful.  Several lenses etc were tried, most made no difference, a couple made it worse (Not sure why?).  (This link explains what the various numbers mean, but the gist of it is that with my best eye, I can see at about 6 metres what you can see at 36)

So. Enough to mean this.  I can see.  I can see you if we're talking. I can see colours, shapes, people.  I can read my computer screen (though only for a few minutes at a time, it is exhausting and contributes to the headache I have had for 2 months now) when magnified to 200% (which is a PITA because you have to scroll almost 3 times to get across the screen).

But I probably wouldn't recognise you across the street (I've noticed this.  I look at someone, and I suspect it may be them, but I really can't tell and I've gotten my own child wrong).  I cannot read a normal book at all.  I will never drive again (devestating, both emotionally and logistically for us).  I can't see our 56cm TV well enough to make it worth watching (not a great loss, I realise, but I'm giving you an idea of where I'm at), but I can see better on my SIL's large screen TV.

Anyway. My Rheumatologist and my GP were insistent that from here on in, I see only the Opthamologist in charge, the Doctor who owns the 3 clinics. A lovely, older gentleman (with a spiffy bow tie that exactly suits him).  He looked in my eye, looked back at the chart, looked in my eyes and hmmphed. He said that the pictures were clear, the oedema was terrible. But that he couldn't see any evidence of it in my eyes.

I found myself wondering if perhaps something was just wrong with his, as obviously he was mistaken.  My vision was no better, (in fact, my Visual Accuity test was slightly worse in my good eye). Of course the oedema was still there.  Otherwise, why couldn't I see?

He said he really, honestly didn't know what to think.  And that he was sending me to his colleague, a retinal surgeon.  One of the best, he said. An appt was made for 2 days later. I left, let down that yet again I'd paid a fortune for an appointment that provided not a single answer. (Also bear in mind that for each of these appointments, Joel has to take hours or a day off work.  Eventually, even with a boss as wonderful as Alan, this is going to wear thin).

Showed up bright and early on Wednesday to meet this esteemed colleague everyone raved about (Well, ok.  The Opthamologist, the Optitian and the receptionists. But that counts, right?). I should have googled him.  That would at least have prepared me somewhat for the 12 year old that met me!

Seriously. he cannot possibly be my age.  (Except when I did google him later, I discovered that not only has he been practicing at one of Brisbane's best practices on Wickham Terrace - where all the 'good' drs are here in Brisbane - for 5 years, but that he'd spent years training at the Royal Victorian Eye and Ear Hospital, and then in the US working at the MAYO clinic and at New York Presbyterian Hospital & Columbia University Medical Centre, both kind of prestigious hospitals to have done fellowships at.  And is now training other Retinal specialists.  He's been a Specialist for longer than I've been married. I'm not kidding - he looks like he's 25). 

Anyway.  The point, I guess, is that this guy is good.  Really good.  And all he does is retinas, really. He sees my condition all of the time.  He specialises in Diabetic Eye disease, macular and retinal disease and retinal and vitreal surgery.  He's kind of the guy you want checking out your eyes, I guess when all of the others have shrugged their shoulders and said "Meh. Not a clue...".

And he was baffled. (Awesome, no?).  First though, he did help a bit.  He sat me down and explained better what the previous scans had showed, I guess in a build up to the blow he was going to deliver.

The pictures on the right of this image give you an idea of what we were looking at.  The picture on the top right is what my scan looked like.  He explained that the red was bad - indicated inflammation.  And that the white is devestating.  And I had a lot more white than red, similar to this picture here.  My images now look more like the one on the bottom.

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Ok. This is what my oedema looked like. (Although mine is a Branch Retinal Vein Occlusion, rather than a Central, the image looks identical).  One massive pocket of fluid in the middle.  And now, after 6 weeks of steroids, the bottom picture is what it looks like now. The swelling is completely resolved.

So that's an explanation of the scans.  It gave me an indication of the severity of the oedema, and what we had been up against. It certainly showed why my vision had been so drastically affected.

He ruled out the conditions Dr#1 suggested.  So this was NOT caused by the prednisone.  Of that he is 100% certain.

He is certain that it has not been caused by an infection of any kind.
He is certain that it had not been caused by a trauma of any kind.

He is 90% certain that this is NOT caused by my diabetes (a surprise, I assumed they'd all be happy to palm off the fat girl and call all of it diabetes). He said that diabetes can absolutely cause what he's seeing. That it wouldn't be an unreasonable dx.  EXCEPT.  That there are almost no other diabetic changes in my eyes. Not nearly enough to have caused what has transpired over the past 2 months.

So he said while he isn't prepared to 100% rule it out he said he thinks it's highly unlikely and would be completely atypical.

He said if he absolutely had to put money on it, he'd be betting auto-immune or vasculitis. He said Lupus would be a perfect fit.

And I sit there stunned.  After being told only 2 weeks ago that it couldn't be lupus, he's saying it's the most likely thing to have caused this and that he would be encouraging my Rheum to reinvestigate Auto-Immune or Inflammatory causes, because fibromyalgia absolutely can't have caused this.

He has ordered more blood tests, and MRI and an MRA on my brain. He is concerned.  He said he loves a good challenge (is it wrong that a part of me wanted to tell him I'd be no challenge at all, all he'd have to do is keep wearing whatever that aftershave was????? No. I absolutely do NOT have a crush on my retinal surgeon. Shut up, Averil. You love your OB) and that this is certainly one of his better ones.  Awesome.

So. Other than the bare facts, I'm processing.  It's not the end of the world, I'm not blind. I can see. But, it's an enormous thing to me.  It is not the result I was expecting.  I thought that by the time the steroids had reduced the oedema (they have, completely. It is gone), my eyesight would return.

Instead, I have been left with Macular Ischemia, where those blood vessels have been blocked completely, allowing no blood to enter into the areas of the retina.  This damage is permanant, and I've been advised that there is no available treatment (as the swelling is gone, and that is what they would have treated) and that I should not expect any improvement in vision.  He likened the initial incident and my retina to a pure white brand new carpet.  He said throw a few cups of hot black coffee on it.  It's never, ever going to be completely white again. The initial (slight) improvement I got on my first 4 days on steroids is as good as it's going to get, as the following several weeks haven't brought any more.

As for logistics, we're really struggling.  Getting Alexander to school is still by far our biggest challenge.  Second to that is arranging and co-ordinating doctors appointments and tests for me. Trying to find days when someone can take me (when there are really almost no 'someone's available). 

Those are the basics.  There's more, emotionally mostly.  I have fears about what will happen as we continue to taper the prednisone without knowing what caused this in the first place.  When I'm off the pred, if it's an AI, will this happen again, taking out what is left of my useful vision? That terrifies us, and literally keeps us awake at night.  I need the doctors to work this out before I get down to the single figure doses of Pred.

And there is what I have lost.  I know that it, in the grand scheme of things, is nothing compared to what so many others face. But there is a sense of grief, undeniable.  Mostly, I haven't let myself go there yet. But it's there, I can feel it bubbling away, and I imagine soon it'll find it's way out.

Enough of this.  I'm going to go visit Thea and do a Sunday Sessions.  If you got this far, I'm impressed.  And grateful for your caring.

Something truly terrible has happened

I don't want to pile on the heavy stuff after this morning's post. But it can't be helped.  I've been online today, and have stumbled across something really scary.

I give you...Shane Warne's hair.  And makeup?

My beloved Matt Damon....has gone from this..

To this...

The once beautiful locks of Rob Pattinson...

I hope Cosmopolis, the movie he just finished working on was worth this travesty...

I've long been in love with Rob Lowe.  Well. Let's be honest.  I'm still in love with Sam Seaborn.  It's not got that much to do with Rob, though I do think he's all kinds of delicious.

But from Sam...

To....Wham???

It's getting serious folks.  Where have all of our men gone?  What on earth have these Hollywood folk done to their hair?  Proof that this has gotten beyond just makin' movies and moved into truly terrifying territory?

Behold. The once harmless father of two...Ben Affleck. 

What kind of nightmares must Violet and Seraphina be having tonight??????

What are we going to do?  Who's next? 

Things that have made me stabby this week....

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This.  I am so angry, so unbelievably angry, that I don't know how to write about it without a hundred expletives. I literally shook yesterday, knowing the deal was done.  This photo might have tipped me over the edge.  The smug grin on the face of the Malaysian minister's face.....




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This. Infuriated.  Frustrated, heartbroken, helpless.  We're watching this happen and we're doing so little about it.  We can 'liberate' the sh!t out of Afghanistan and Iraq and Libya and intervene against mighty nations with all of our firepower.  But step in against a disorganised, mercenary militia blocking aid to children?  Oh, heaven's no. Superpowers indeed.

I'm told I get myself to worked up about this.  About the atrocaties facing families in Africa and in other developing nations.  I'm told I lecture too much, blog about it too much, think about it too much. I'm told I should stop.  I lose readers every time I do talk about it.

But here's the thing.  I'm a mother. And I can't help but look at my two sons and try to imagine which of them I'd leave by the side of the road - and keep walking away. Keep walking, to save the other. I try to imagine how even if one of them died in my arms, I could walk away from his body, just on the side of the road. 

And every single night, I'm having dreams to that effect. It changes each time.  We're on a boat and forced to choose.  We're running from fire and forced to choose.  We're walking to an aid camp and we lose one.  It's a different dream every night, but it's every.single.night.  And it's graphic, and I wake up literally crying out, sweating, shaking.  I hold Sam closer, breathing him in. I reach out my arm or my foot and touch Joel, make sure he's still there. I listen for sounds of Alexander moving in his bed. And in the morning, it's still there.  These are not dreams that leave in a whisper, too far away to grab details the next day.  It's been a week and they are ALL still there.

Because what mother should have to be faced with that as an actual, probable choice?  This one? Why is my heart and my child worth more than hers, because we had the good fortune to be born here?

This. Reports that over the weekend, the Taliban kidnapped an 8 year old boy (my Alexander is 8. My mind cannot comprehend this), angry that his father, a policeman, had refused them the use of a police vehicle. They kidnapped his 8 year old son, and they hung him (that last story asks for 'reaction' to any given story. I noted that there were actually people who marked this as 'hilarious') Can the world get sicker than this?


I'm terrified of the answer.



And yet, top stories in Australia? Most talked about on commercial news, twitter and Facebook?

That Mia Freedman had the audacity to say she didnt' 'get' the whole Cadel Evans is a hero thing.

“I’m not going to be popular when I tell @karlstefanovic on @thetodayshow that I don’t care about Cadel Evans.”

Now, I'm going to be honest. I stayed up and watched the final stages. I confess to whooping and squealing when he slaughtered the Schleck brothers in the time trial. I didn't care that it was 2am and I could wake up everyone. I was thrilled. I was taken back to when I was 7 years old and Australia won the America's cup.



I delighted in an Australian winning the hardest race in the world for the first time. I thrilled at his success after 2 such near misses and riding with a broken arm! I am spiteful enough to admit to being glad to see the arrogant Schleck brothers go down. And I was gratified to see an athlete, free from the doping controversy that dogs the sport of cycling, win in such a fashion.

ANd I teased Mia on Twitter before she went on the Today Program, after she'd said she was going to say she didnt' care. Told her to fake it!

Just when I thought you were one of the cool kids, Mia. Shame! :D You can't go on TV and say you don't care. Quick! Learn to fake it!

@miafreedman (Have you tried listening to Phil Liggett's voice...you'll fall in love with cycling. Trust me). #tdf #philliggett #sbstdf

I was kidding (well, not about the delightful Phil Liggett. That man's voice is something else....). Didnt' think another thing of it. Apparently, idiots like Karl Stephanovic and half of this country (I'm guessing the half that watch the Today Show, Sunrise, Today Tonight, A Current Affair et.al) were not.

Twitter and the blogosphere exploded, bringing heated arguments from both 'sides' (as if this was important enough to make anyone pick a side. We can't pick a government, but by gosh we can tell you which side of the "Cadel/Mia" arguement we're on)!



It's still being talked about today! That she might be - gasp - "UN-Australian" for not thinking Cadel deserved a public holiday. That maybe, there is more worth in being a fireman or a social worker or someone who saves actual lives than in being a very highly paid athlete. For commenting on the huge divide we have in this country when it comes to the accolades we heap upon our sportsman and those crumbs we feed to real heroes, people saving actual lives.

I'm a sports fan. Through and through. No question. But I happen to agree with Mia. I happen to think that while it's ok to celebrate Cadel's win, it's ridiculous to talk of a public holiday. That it was over the top for the Today Show to actually stand and play the national anthem because he won the race.



And once again, a commercial 'news' program makes me embarrassed to be Australian. Go on, call me 'un-Australian'. Sometimes, I think I'd be proud to be called so.

Want to know the scary thing? All of this gets my back up, and it's Tuesday morning.





Sunday Sessions - Michael Jackson

Linking up again with the beautiful Thea's Sunday Sessions.  All you have to do is pick an old song you love, and then a new one.  Easy Peasy!  Find all of the details here on her blog.

The other night on Twitter, we were talking, a few of us, about our favourite Michael Jackson songs.  So of course, (especially after she led off with one this morning), is where I'm starting out.  My favourite MJ hit.

And I'm stretching the 'new' (don't I always????) here.  I'm putting up one of my favourite MJ remakes - James Morrison's version of this same song.  I love James Morrison's voice (except I'm embarrassed to admit I'm always mixing him up with Jamie Cullum, another Brit I love. I dont' know why I keep screwing that up).

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Frustration

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As I mentioned earlier, I've been thinking and researching everything I could about the Carbon Tax this week, trying to better educate myself. 

And (while this isn't strictly about that, the points are the same), I stumbled (literally, using StumbleUpon) this old video. It is Severn Suzuki speaking at the UN Earth Summit in Rio de Janeiro in June 1992.

Do you remember this? A lot of you (according to Nuffnang's latest Blogger Survey, most of you are younger than me.  As in, in an entirely different age bracket!! When did I get old? I'm 35 for heaven's sake?!!?!?!?) may be too young to remember this, I was only 17 at the time.

It seemed so hopeful (at least in my teenaged, unjaded mind).

That was nearly 20 years ago.  And where are we? How much closer have we come to fixing a single one of these problems, helping a single one of the nations that this brave, eloquent 13 year old girl spoke about? (I didn't realise until doing this that she is in fact, David Suzuki's daughter! What a proud moment that must have been for him).

We're nowhere, is where we are. Still debating whether or not we even have a problem, let alone what we can do about it.

Watch it, especially if you don't remember it.  Watch it through new eyes.  Watch it through the eyes of a parent, leaving this mess for your child.  It makes it feel even more urgent and frustrating for me.



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To learn more about Severn Cullis-Suzuki, you can read about her here, or find her FB page here. She has different ideas now about how to create change, focusing more on the things we, as individuals can be doing, rather than expecting change to happen globally, from greedy governments and corporations.

The Lucky Ones

Sorry. Most of this was written at 1am this morning while I was up with a sick little man (pneumonia). I didn't get a chance to post it.

Been quiet this week, sorry.  Hanging out with the three great loves of my life.  Trying to read a bit too, great with Joel home.  And despite my determination NOT to take advantage of his unexpected week off, he doesn't have to try too hard to convince me to be kind to my body and sleep while he and the boy go do 'man things' (read - he spoils Sammy rotten and takes him on bushwalks and scooter rides and to the park and bike riding.  After which they get Alexander from school and do it all some more).  Could my children (and indeed, I?) be any luckier?



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 Not mine, of course. I can't get images off Joel's computer at the moment, he's put a lock on because Sammy keeps deleting everything and for the life of me I can't remember the password. But remind me, I have videos I want to show you.

 I see my GP tomorrow morning.  I'm ridiculously nervous.  I'm nervous that my rheumatologist will have ripped him a new one.  I'm nervous that she'll have forgotten me and not contacted him at all and I'll arrive in the morning and he'll ask how he can help me today? I'm nervous that noone will have talked to any of the 3 opthamologists and come to a single conclusion about my eyes.

They kept telling me that the longer we leave the eyes, the more structural damage would be done by that (apparently shocking) amount of fluid building up.  Well folks.  I think we're up to week 6.  Time to stop f****ing around, no? The last test showed deterioration, not improvement.  That doesn't reassure me.

(Update. Have seen GP. He has spoken to Rheumatologist, but noone has spoken to an Opthamolagist.  Have an appt with Head Opth on Monday afternoon).

I've been thinking a lot this week, about the Carbon Tax(err..language warning on the second one. But if you can see past that, he's freaking funny.  Read some more, there are 3 posts about the CT), about the Murdoch enquiries, about the upgrade the UN has placed in Somalia from severe drought (a level 4 humanitarian crisis) to a Famine (Level 5 - as bad as it gets).  And I'm sad.  I'm sad that we're more intrigued by the phone hacking (as terrible as that is) than we are about what we're doign to our planet and how we're allowing others to live.

And I'm frustrated at my own inability to do a damned thing about it.  As I was reminded more than once this week - nothing I write makes a difference.  It doesn't help anyone. 

And it's true.  Millions of people are dying, in horrible, inhumane ways. Mothers are leaving their babies on dusty roads, the life finally whispered from their tiny bodies. Not even a proper goodbye, or time to mourn, for their are more hungry mouths to feed and a refugee camp to walk to and armed militia who will take everything else you have.



And we sit here, so far away from it all, so safely ensconsed in this beautiful country and we have this debate about the Carbon Tax.  And debate is a wonderful thing. It is healthy and hopeful and (ok, not always hopeful, not a lot of what I've read this week has been more than cynical and partisan, from both sides) it needs to happen. 

But it's hard, even for me, from a family that can least afford this carbon tax, to allow myself permission to complain about it.  About the cost, anyway. I have complaints.  I think it'll do next to nothing, that it is far too small a step from what is needed.  But it's a step, at least, in the right direction.  But the cost, even when I can't for the life of me work out where we'll find it, seems so petty when I live here.

Even if the worst (financially, I mean) happened and we were bankrupt and had to leave our home - I know without a second of doubt that my father and Joel's sister, and probably even Joel's parents would all immediately offer us a home, to share with them.  I know that my little boy is ill tonight and that if he is still ill in the morning, my GP will look him over while I'm in my appointment.  That he won't charge us a cent. 

I know that even if I was living in a tent, I'd have access to clean, running water (not my broadband though, and lets not pretend that that wouldn't freak me the hell out). That there are places I could go to feed my family, shelter them at night.

That my children are not dying.  That while I can't STAND the woeful diet of my youngest child (yoou know 3 year olds and their 'I'm only eating cornflakes/LCMs/biscuits/bananas/green food' this week' phases) and feel a rising panic at the lack of vegetables in his diet - he has boundless energy.  He is cuddly, but not overweight at all.  He is healthy, glowing, shiny-eyed.

And he is safe, as are his brother and my husband and myself. Ensconsed in our mostly-happy, music - filled, matchbox- car - filled, laughter - filled home.  That there are ridiculous tickles and 'action fingers' and hugs and kisses and snuggles that can last half an hour at a time.  There are hundreds upon hundreds (literally) of books.

We can't afford daycare for Sam, and I"ll be honest.  I 'need' it. You know, in a white-problem kind of 'need'.  I'm exhausted, in pain and he is in desperate need of socialisation.  we cut off the foxtel, we can't justify it.

In the last month, I have had roughly $1200 in medical expenses (that's without results. Just consults and tests).  Our TV, DVD player, microwave, sandwhich maker and toaster all died. Our two back tires on the car became illegal and unsafe. Our dryer is dead, Samuel ripped the door off it and the latch snapped. Both boys were in desperate need of new sneakers and warm clothes.  And when you write it like that, it just seems so overwhelming, you know.  How everything happened right now, all at once.

Except (and I rarely like revealing this kind of $$ issues on my blog. Money is usually nobody's business, but I'm making a point) last Monday, I got a letter from the Family Assistance Office (or whatever they're called now. Has it changed again?) As carer to Alexander (a child with autism), the government, besides the small amount they give me each fortnight, was giving me over a thousand dollars. It was already in my bank account.

I didn't ask for it.  I knew it was coming (well, I knew some of it was coming).  But I didnt' have to jump through hoops for it.  I didn't have to beg for it.  I didnt' have to steal it.  And Joel and I joked that it never comes when we have no bills to pay or any pressing financial needs.  It's never there when we could just spend even a dollar on it on something fun.

And I thought to myself.  But it comes. Imagine if it hadn't.  So I was able to get the tests and see the doctors.  We were able to replace our tires and the boys shoes and buy them some warmer clothes (damned growth spurts, both of them.  We did this for both only about 4 months ago).  I was able to fill some of my scripts this week, meds I didn't think I'd be able to afford. We bought a sandwhich maker and this weekend, may get a microwave.

And when Joel's tax return goes through, we'll also get FTB supplements as well.  Again, it's a 'tacky' subject to talk about and I don't think I ever have on here, or anywhere else online. 

But don't you see?  We're so lucky here.  Of course it's not perfect. Of course both sides of the political aisle are screwing a lot of things up.  And of course, our lives, our family, like so many others are struggling with the rising cost of living, just making ends meet. 

But it's hard to really, seriously complain about a carbon tax, surely, (at least, in the 'what will it cost me?' way) when we receive so much. Just for being lucky enough to live here. For being lucky enough to birth my children in this country, I have help. I have healthy children, a warm bed to tuck them into food to fill their tummies.  I have ridiculously fast internet to talk to my friends and blow up the font and read whatever I can get my hands on.

I don't know. This post is rambling and may make no sense.  It's after 1am, and it's been physically and emotionally one of those really bad days (did you know, Ave?). But I can't help but think that for all of my stress and worry, I'm still so incredibly lucky.  I don't deserve this, any more than any other person born in any other country.  But I was lucky.  I think the least we can do, if nothing else, is remember that.

Including this (for the first time in weeks, Woot!) in Flog 'Yo Blog over at Glowless.

Quick Update

I'm here. Sorry, so many of you have left such lovely messages, and I haven't been able to get back online to fill you in.  It was a rough weekend, for all kinds of reasons and I just couldn't seem to get myself to sit here and think about the blog or anything else.

For those of you on FB, you'll have some idea of how Friday went.  For others..it didn't go remotely how we hoped it would go. I don't have SLE.  In fact, my rheumatologist at this point is not convinced that there is any auto-immune disease at all.

I have Fibromyalgia, and it is in an intense flare up, no question. I have a sero-negative arthritis, also acting up.  My diabetes has complicated things and is contributing to my pain (something I didn't know it could do). 

She didn't begin to hide her horror, however, at the treatment plan I have been on from my GP(well, 3 from the same clinic, as my main one is not always available). She thinks that they have panicked the first time my eyesight went, gone with the thought of a Giant Cell Arteritis and put me on a (in her words, ridiculously high, even for GCA) dose of steroids and simply left me there. 

We won't even discuss her face when I told her about the 5 day taper a couple of months back.  (I'd be interested in the letter/phone call my main GP will get over that one.  I'm genuinely not sure he'll agree to continue treating me, which makes me sad, as despite what I've no doubt are some mistakes, he is the loveliest, most caring man who I believe was trying to stop me killing myself).

Anyway. I was shattered, in all honesty. I know it makes me sound just horrible, being upset when told I don't have a potentially serious, complicated disease like SLE.  But a)it made a lot of sense to me - everything I read about SLE, all of the "My Story" descriptions etc, it was like reading exactly about myself.  And as I had been lead to believe as early as October last year that my Drs were convinced this was auto-immune, of all of the AI possiblilities, this seemed the best fit.

So, first, that rug was pulled out from under me, when I thought we may just get lucky enough to get an answer and a treatment plan. But to be told it was a)NOT IE and probably mostly Fibromyaliga and a mis-management of steroids, I burst into tears. I'm not proud of my reaction, or my feelings for the 12 hours following (in my defense, my period was 2 weeks late and arrived the next day.  I get to blame hormones at least a little). I felt like I was being told I was making it all up, making a mountain out of a molehill.

So many in the medical community dismiss FM as a 'made up' disease, or just what you call it when nothing else tests positive.  They can dismiss FM patients (especially those like me, with a history of depression, although it's one I didn't have before I got sick) as hysterical and hypochondriacs.  I can't tell you the number of times I've seen a Doctor or nurse hear the words "Fibromyalgia" and see an overweight/obese diabetic and have them switch off, not hearing another word.

I felt like that was where I was again.  The fat girl who didnt' take her diabetes seriously and had the whiner's 'disease'.  And I felt (as a kind friend pointed out to me) that this diagnosis didn't validate the amount of pain I am in, how incredibly my life has altered in the last 12 months. It doesn't sound serious enough to explain how a 35 year old woman can't put a bra on, or roll over in bed in the morning or hang out washing or sit for more than 20 minutes without hurting for the next 2 days. 

It sounded like I'd been making it all up, or at the very least exaggerating it.   And I'm not.  I haven't. I've come onto the blog, and I know I've talked a lot in the past 6-10 months about how sick I'm feeling. But I haven't embellished.  I've held back some of the more personal, embarrassing parts of this.

So I thought (and I realise how ridiculous it is for this to be in my head at that time) that I was going to come home and tell my Dad, and Joel's family and you what the Dr had said and everyone was going to roll their eyes in disgust and write me off as a hypochondriac. Even my father, who adores me and is agonised over the decline in my health in the past year, thinks fibromyalgia is a psych disease. That it means I just have a low pain thresh-hold.

The eye thing is kind of another story, one which the Doctors are all far more interested in (my focus, while I am concerned, of couse, about my eyes, is the big picture. To me it's all related, the pain, the stiffness, the inability to fight infection, the headaches, the vision loss, the other things..all of it is part of one big problem to me. Right now, ALL any of them are interested in discussing, even my Rheumatologist, is my eyes) is my vision loss.

Scans have shown massive macula oedema - a huge build up of fluid.  They have shown that I am creating blood clots behind my retina, clots that should not be there.  And they don't know why.  One doctor thinks it's just the diabetes, and wants to inject medication into my eyes to reduce the swelling.  Another thinks it's something called antiphospholipid syndrome, which is potentially much more serious, and which I am being tested for today.  One wants me treating the eyes with steroids, one wants me banned from ever using steroids again.

I think (it wasn't clear at that point), once my blood tests come back, my Rheumatologist (who I think has placed herself in charge of the idiot pack), my GP and one of my Opthamologists (I don't know which one she'll decide to talk to. She said she would be seeking out the most senior one they have) will this week talk about my eyes, and what the hell do do with them.  As it stands, I am officially one bar(number?) up from legally blind. My left eye doesn't see anything on the chart (no biggie- it hasn't worked since I was a little girl) and my right eye (which two years ago had better than normal/perfect vision) sees at 6/30. So what you can see at 30 metres, I can't see until 6 etc. No corrective lenses make a difference, and so far no medication has either. There was a slight deterioration over the week in my test results (that surprised me. I thought they were getting better, but perhaps I was just adjusting?).

So that's where I am.  Embarrassed. Let down. And kind of confused.  As far as my Rhuematoligist is concerned the plan is this.  Rule out vasculitis and APLS. Spend the next 3-4 or 5 months getting me off the steroids. 

And then we start again, see where we're at.  It sounds like a sucky-way-too-long plan to me. But it's the plan. As far as she is concerned, the steroids have done so much damage, and would at this point be masking so much, that she can't do a thing until they are out of my system. And as the doses I'm on are so high, she wants the taper to be very, very slow.

That's all I've got.  I'm more clear headed than I was (thank you Jenn, Avey, Em, Bec, Marg, Karen and Anna who were there for me at my worst on Friday night).  Especially you Jenn, for being kind, but firm. While you're not my doctor, I think you're an amazing one, and on Friday, you were an amazing friend.

And thank you to everyone who has left messages for me over the past few days. I have read them.  But it seems this has all caught up dreadfully with my darling husband and he has reached his limit, emotionally. He has taken a leave of absense from work and over the weekend, I watched him start to shut down.  Sam called him on the phone yesterday, while he was out grocery shopping and when I got to the phone, my sweet man was sobbing in a carpark, all by himself.  My heart is broken for this amazing man.  So you'll understand why right now, he is where I will be concentrating.  Pulling myself together and finding ways to keep this family ticking over.

We have lost our transport for Alexander to and from school, and have literally no idea where to find any.  It is looking more and more and more like Samuel is on the Spectrum. My sons saw my Dad's wife (who suffers from dementia) have a meltdown and attack him (they've never seen it before) and Alexander is struggling to wrap his head around what happened, and his feelings about it. 

My boys are in crisis and it's time for me to step back up to the plate.  I'll be around.  I'll be blogging. But I have to be stronger and better for them.

Thank you all for asking though.  I'll update when I have something to update - when the blood tests come in, or when I see my GP on (probably) Friday.

Why am I freaking out again?

My rheumatology appointment got bumped.  Joel did a job for who it turns out is one of my rheumatologist's best friends. She had rheumatology books out and they got to talking and he told her about me and she said "Oh, she should go see Dr B - she's one of the best" (She is.  She's on the board of the something-or-other that's apparently a big deal {why can't I remember this stuff right now} and she lectures a lot and she is on the board of the Therapeutic Drugs Admistration, I'm told.)  Anyhoo...basically Joel told her we'd made the appt in Dec and had a few weeks to go.  She (after having heard Joel talk about the story, particularly once the eyes got involved) said "No, let me email her) and a day later I got a phone call (after the receptionist assuring me there was no possible way for an earlier appt, something I was ok with, believe it or not) saying "we can see you tomorrow. She'll work through lunch".


So it's today (as is my 3rd opthamology appt, where they check to see how well the pred is doing and if the fluid has reduced and whether it needs draining) and for some reason my mind is BLANK.  I can't get it all straight in my head.

And I need it to be.  I need to be calm and unemotional, but still be able to tell her just how bad this has been and is continuing to get.  Enough truth to make her take me seriously without simply writing me a psych referral and wondering why she wasted her time with me.

I feel sick to my stomach.  I can't stop moving and can't focus on one thing (I have been writing this for an hour. I've no idea what it says) and I really wanted to take people's advice and write it all down for her but I can't think at all.

Not ready for this at all. 

Savouring Family Time

Continuing on with July's Guest posts - here is a great one from Kirsty, who blogs over at My Home Truths.

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Savouring Family Time

I am not the best at being “in the moment” with my family. To be honest, I am the last person who should be offering any advice on spending more time with their kids. I work out of the home four days a week so when I am at home I have lots and lots and lots of things to catch up on.

On a typical school day I rush about getting the kids (and me!) ready for school, daycare and work. The mornings are not ideal for play or spending quality time or being “in the moment”. I am far too preoccupied with making sure we all emerge from our house fully dressed with nothing (and preferably, no-one!) left behind.

The afternoons are hectic as well. I race from work directly to school to collect Miss 5 (hopefully not too late), then literally propel her around the corner to our house to wait for the arrival of Master 7…unless his special transport is already waiting there for our arrival…have I mentioned that I’m perennially late?

After a quick afternoon tea we all pile into the car to pick up Miss 1 from daycare. When we arrive back home it is time to unpack school bags, prepare lunches for the next day, look at what homework needs to be done and think about what to cook for dinner. Alas, not a lot of opportunity to play a game or throw a ball or pretend to be a shopkeeper.

Yes, I am busy. Yes, I wear a number of hats in life – mother, wife, daughter, friend, worker, housekeeper, cook, teacher…just to name a few. However, I am coming to realize that I DO have a choice. While I have lots to do, I can choose WHEN I do them and I can choose HOW I get things done.

I confess I am a control freak and like having things prepared before time. I literally stress out if I have to do extra things in the morning – I really do. But that is my issue to deal with, my kids shouldn’t have to wait around while I make their lunches. Equally, I shouldn’t feel guilty for leaving the washing up to pile up a little so I can have some extra cuddles with my kids.

It is a delicate balance, this working mother caper. I have been doing this for years now and I’m still trying to work it out! But, I am getting better, and, I am finally starting to get my priorities right. Sure, it has taken me the better part of a decade to get to this point, but at least I realize now where I’ve been going wrong while I still have the opportunity to enjoy my kids.
So, today, when I got home from work, my eldest daughter danced with me and I sat and listened to her day. I watched my son draw piano keys and a pipe organ just like the one the Count from Sesame Street plays on. I had lots of cuddles with my baby girl and helped steady her eager walking legs.

I still haven’t made lunches or got our clothes ready for tomorrow, but I’ll get there. I’d rather share these small special moments with my munchkins, while they want to share them with me and while they still think I’m cool!

Kirsty Russell is a working mother of 3 (one of whom has albinism and autism), who tries to fit in work and advocating for a special needs child into an already overloaded life. She suffers sporadic bouts of mother-guilt and is endlessly searching for that elusive mirage called a work/life balance. You can read Kirsty’s home truths over at www.myhometruths.com, like her facebook page www.facebook.com/MyHomeTruths, follow her on twitter www.twitter.com/KirstyRussell and add her to your circle on Google+ http://gplus.to/KirstyRussell As you can tell she may be just the teeniest bit addicted to social networking….