Archive for December, 2009

The birthday of the middle child… Happy birthday Julesy!

I opened Mina’s birthday post with the phrase “holy fucking shit balls”, which is kinda hard to beat, really, and I am just going to use that as my excuse for taking nearly a month to write this birthday post.

Yes, it was the pressure of trying to beat that opening phrase that did it, and not at all the fact that you are living in the eye of a complete fucking cyclone right now. And not at ALL because I am lazy.

We haven’t been very good at hiding it, either, even though we try really, really hard.

But I have to say, that with everything else going on, you make my day so much brighter in so many, immeasurable ways, in that way that only Mr Jy can.

Because holy fuck, you are one funny kid. Not just in that way that all kids are precocious, funny and quotable, but in that “Not everybody gets me and I am OK with that” kind of way. You love the in-joke, the repetitive, especially if it involves the “Squirrel!” joke from “Up”

You’ll be having a conversation, sitting there talking to me and you’ll just say “Squirrel!”.

And yes, I laugh every time. And then I do it, and we start again. And that’s our day.

And even though you’re funny, we have been going through a bit of a thing at the moment where we are a bit concerned about those fixations: what is normal, what is healthy and along with some other little things, we are a bit concerned.

Through friends, your Dad and a shit load of watching, I have become aware of Asperger’s. And honestly? Even though I initially thought that you might be Aspergic, after having really observed you for the last period of time, I honestly don’t think it’s the case.

Because you care too much. You express empathy in a way that an Aspergic 4 year old wouldn’t. You are genuinely caring and loving towards me, and haven’t yet learned that that is the expected thing, so I am not inclined to believe it without just seeing how we go.

Because sometimes? Kids are a bit different form other kids. You are shy with other kids, take a long time to adjust to change and really love your routine. But, I dunno… I just don’t see it.

I don’t really know what normal boys are like, to be honest, so I am kind of flying blind here (you can just be a practice run for Moo :)). The male role models in my family aren’t exactly stellar, and your Dad, as wonderful as he is, has issues of his own. But you know what? Honestly, if you are Aspergic, or even if you are completely normal, you would be wise to follow your Dad’s example of how to be a man.

I want to take a moment to talk to you about the person that will be your biggest influence, inform your world view, and hopefully be your guide through the inevitable talk (that I want NOTHING to do with) about male bodily fluids, Playboy magazines and car-things – but also about the good stuff like how to treat girls,  how to talk to your mother and sister and how to take the blame when the Feds hit us up for downloading Dexter.

Your Dad’s ego & spirit have copped a pretty big flogging this year. Actually,  everyone’s has really, but having to watch your Dad be bullied, called a liar, harassed and belittled, simply for the crime of being injured at work, is something that I am kind of glad happened when you were too young to remember.

It sucks. There’s not much else to say about it.

But something that I want you to know (because I honestly don’t know how this is going to end – whether our marriage is going to survive, or he is!), is that your Dad went to work every single day at 5:30am. He came home in the middle of the day for a few hours and helped me look after you & Moo. Then he went back to work until around 6-7pm, sometimes longer, to help support the family. And then he’d come home and help me.

He worked those hours when you were a baby, when I was building a business and only earning $10,000 a year in the process. He worked those hours when I was sick. He worked those hours throughout so much of your life, because I was building a business so I didn’t have to go back to work. And no matter what happens, I want this written here as a reminder of the selfless, caring, honourable man your father is.

He was good at his job. So good, in fact, that when a driver pulled out in front of him with only a couple of metres to spare, he managed to swerve a whole bus away from the car, avoid killing the driver, and injured himself in the process. He was so good at his job mostly because he’s a buttburger, but you know what? He’s the best kind of buttburger. He’s OUR buttburger.

And even if it turns out that you are, in fact a fellow buttburger, the same applies to you. We don’t love you in spite of how you are, we love you because of it… mostly because I never stop cracking up at the burger & butt jokes… but nonetheless… I hope as hell that you are like your Dad. But don’t tell him I told you.

The other thing that I wanted to talk about is the birth of your baby brother. I’ll admit, I had my doubts about how you’d cope with not being the baby, and as usual, I have underestimated you. How you are with your brother is indescribable – like – the initial shock of finding out Moo was a boy, even though I was SURE he was a girl – has melted away. Because now, I have my 2 boys. My 2 boys. Wow, that’s weird to say, but man, it’s something to behold.

You share your CARS with Moo, and he doesn’t fully appreciate how important that is, because your cars are the most important thing in the world to you right now. And you let him slobber all over them. You are such a great big brother, there are no words.

So you start Kindy next year, I am very nervous about it, but all we can do is hope for the best. I have a feeling it’s going to be OK, because I am starting to learn more about you. And you know, as my inevitably neurotic middle child, you’re actually kind of cool and you enrich my life in ways that are constantly surprising. And I will always have your back. Always.

I love the fact that you think haircuts are painful, that anything other than yoghurt is poison, that you run “like Dash” with a superhero shoulder lead-in (hilarious), that every morning I wake up to you running up and down and up and down the hallway. I love that you use half of my internet quota on youtube, that you are already computer and internet literate, and yet still call a drink a “wink” and Frank a “wank”, and Lightning McQueen “Lighting Irene”. I love that you are happy with the simplest of toys, and you like my attempts at cookies and cakes for your birthday, and that you think that me making you a Milo is a miracle to behold.

I love you Mr J, you’re wonderful just the way you are. Happy Birthday Rock Star.

Onwards, upwards, forwards… and probably backwards.

I created this new blog so that I don’t bore my usual readers with “Cushing’s this, Cushing’s that”, “brain tumour this, bones hurting that”. I can tell it’s already becoming tedious to some people and so, I have separated it out so that those who are interested can read – and those that aren’t, well… I can write a bit more freely on a single-topic blog than on a general one.

Because I want to talk about it.  A lot. And whilst it may seem like I have a sense of humour about how much I actually talk about it… well… I kind of don’t. Because it’s scary. I just need to talk about it. Yes, I am boring. Yes, it’s all Cushing’s Cushing’s Cushing’s. But right now, I am somewhat pre-occupied with it, because I am in that lovely period of limbo we call “waiting to see a specialist”.

I do not yet have a formal diagnosis from an Endocrinologist, but at this point, I honestly believe that it is a technicality. For 20 years, I have suffered from the exact symptoms of a pituitary tumour, but a combination of parents-who-don’t-give-a-fuck and Doctors-who-hate-fat-women, it has been very hard to reach this point.

It just all fits. I either have 8 illnesses, or I have one. Occam’s Razor tells us that I probably have one, and nothing else fits.

And I am not at all alone in my struggle for diagosis. Cushing’s is rare. Probably not so much because it is actually rare, but more likely because it is so difficult to diagnose, even with a Doctor who is vigilant, empathetic, and treats weight gain as a symptom rather than a deviance.

So whilst a diagnosis of Cushing’s is not a foregone conclusion, by the same token, I have been on a journey for 20 years, trying to find out the source of my ongoing health problems. It has been raised before, but I was dismissed without testing because… well…. I don’t know why.

So after fighting for a long time, I finally got a test, and I failed it.

It is the first test of several that I will need to undergo over a period of months… but I have never been so sure of anything in my life… because when I read other people’s Cushing’s stories – they are describing me. Not in that hypochondriac way…. but uite literally in that — EVERY LITTLE THING THAT HAS EVER BEEN WRONG WITH ME IS EXPLAINED kind of way. Like… noone could ever possibly know about that little symptom that I have never ever mentioned because its too embarrassing… and guess what? There’s a reason for it.

And I failed the first round of tests…

And I wasn’t exactly surprised.

So right now, I cycle between too much cortisol and not enough – between waking up suddenly at 3am (even after taking sleeping pills that would sedate a horse!), and then other times, unable to stay awake in the middle of the day, with severe muscle & joint pain that nothing touches – all in the course of a 24 hour period. One thing I am sure of is that my Adrenal glands are fucked. Now, WHY they are fucked is still a mystery, but I hope to keep people updated here.

I’ll probably spend the next couple of weeks writing background posts, trying to document how I feel, talking about my history and just filling up some background for my appointment in 3 weeks.

So, my friends, buckle yourself in :)

When A-types come unstuck

You may or may not be aware that typically, I function like a motherfucker. I am a classic A-type personality, a workaholic, and general overachiever in just about every sense of the word. It’s actually a bit of a joke how many balls I juggle, how many hats I wear, and I revel in having “stuff to do” every minute of the day.

I can’t sit in bed once I wake up, even if I have only had 3 hours sleep, which is common.

I work 18 hour days. I have 3 children, the youngest of whom is 9 months old. In fact, when that 9 month old baby was born premature, I would work a full day inbetween schlepping to the neonatal ICU and back 3 times a day.

I was easily working 8 hours a day, even in hospital. I made a conference call to Florida at midnight, from my hospital bed, 2 days before I had an emergency c-section to save my son’s life. Yeah, Téa’s a workaholic.

ha ha ha.

It turns out that all of this supposed A-type-ness and workaholicness is actually a symptom of a disorder that has plagued my body for some 15 years: what we think is Cushing’s Syndrome. It’s a body that is perpetually in fight-or-flight mode because of excess cortisol production, that has knock-on effects to everything else hormone-related in the body… ie… EVERYTHING.

My inability to switch off, my working at 3 & 4 in the morning without even flinching, were things that I thought were just a side effect of being “busy”, or a “night owl”. It’s funny and cute that you should always expect emails from me at 3:30am.

ha ha ha.

Turns out I am actually really fucking sick.

There have been a couple of back-to-back stressful life events in 2009 that have pushed my body so far in its fight-or-flight response in the last year that everything seems to have just stopped working. That constant “go-go-go” is no longer funny. With endocrine disorders, everything works in overdrive one day until finally, it just doesn’t.

And now, I am declining at quite a significant rate. I am seeing a specialist and should be well eventually, but it’s a long road. Hell, I still have a month to wait to see a specialist!

So I am now having to deal with all that has been going on, as well as deal with daily pain, muscle atrophy, occasionally not being able to feel my hands and feet, complete mental fog (which was initially diagnosed as ADHD but isn’t), and basically using every ounce of energy I have to get through my day and appear like I am not in pain – so that I can earn an income for my family who are dependent on me to live right now (what with Jason being injured at work in a clear cut accident that wasn’t his fault, and GIO sending the lawyers to contest it, rather than do the right thing and pay him… cunts…).

And I am scared. In fact, “scared” doesn’t quite articulate how I feel.

Because I am so used to being the smart, fun, crazy high functioning type, admitting to myself, let alone others, that I am scared out of my wits, and that I may never function at the same level EVER AGAIN is more than just scary – it’s almost like dying.

So I have been going through this process where my body can’t move. It can’t climb stairs. It can’t walk around the shop for more than an hour without needing pain killers and 2 hours of rest. And as Cushings continues to pile on more and more weight onto my body that loves exercise but can’t move, I am terrified of never moving again. And with all those body issues that I already have, it all just feels helpless.

I am SO lucky that I have the job that I do, because despite my pain, I am actually still pretty much onboard and able to work, and it’s business as usual on that front… I am now just having to find ways to work smarter not harder (which is a good thing anyway!) and limit work to 6-8 hours per day. I am now having to schedule on “meetings day” a week, rather than have ad-hoc ones that disrupt my day… and a lot of good things have come out of my limited physical capacity.

But, you know, I need to tell my friends and clients that who I am right now is not my usual self, and for the first time IN MY WHOLE LIFE I am not functioning at 280%. I am actually human, and one rung down, a sick human, with too many commitments and not enough spoons.

Over the years I have given a lot to other people, been there for people, and generally taken on more than I should. But now, I need to lean on others a bit more. I have no mother to tell me that it’s all going to be okay… the only family I have to lean on is the family under my roof… so right now I need my friends to be that family… to tell me its all going to be OK, that the world is not going to fall apart because I am human.

And maybe to meet me for coffee, or to hang and watch a movie, or just let me talk shit about whatever and just be there, because right now, I just need to feel less alone.