All posts tagged quot

Yay 4 day work week (or whatever it is you people say).

by admin on April 5, 2010 in with No comments

I would wander into the tea room, give you a smile and say something small-talky along the lines of "oh no, another work week, but at least this is a short one", except, all I did was work all weekend. Dealing with tech support issues that aren’t even my problem. So unfortunately the niceties aren’t really coming easily today.

The Web Design business prepares you for being a Doctor in quite a few ways you wouldn’t expect… long hours, lots of "Emergencies" that aren’t actually urgent, lots of balking at bills and assuming you are "rich", lots of "c’mon, just one more free hit"… mass consumption of caffeine & Red Bull… and a lot of people acting as though you are their own personal counsellor/troubleshooter/agony aunt/whipping girl.

So I figure hey, at least if I am a Doctor I get to say what I do and actually get some respect. People go to jail for practicing Medicine without a licence.

OK, that’s not the real reason for me going to Medical School, but it sounded funny in my head :)

Half full glasses, self doubt and… arseholes.

by admin on January 25, 2010 in with No comments

I am crushed.

There is no other way to describe the appointment with my Endocrinologist today, except to say that I will never forget this day for as long as I live.

Remember how I said I had lap-banding and nearly died? Remember how I said that my Obstetrician nearly killed my baby? Remember how I had a whinge about my GP? Well, let me tell you. I don’t think I have ever felt more humiliated and let down by the medical profession than I was today.

I am starting to think that the problem is me. That I have some sort of persecution complex with Doctors and I am somehow suffering from a delusion that I am sick. I really, honestly, am starting to think that I might be a hypochondriac and not know it. I am sitting here, thinking how, with all of these doctors treating me SO badly, the only common denominator is me. I’d have to be crazy to not start to think that *I* am the problem, right?

But I am lucky, because my lovely husband was with me today and can’t believe the way I was treated today either. I did absolutely NOTHING wrong, and I was shot down in flames so fast that I walked out at 2pm and haven’t stopped crying since.

I actually went into the appointment feeling quite optimistic. I mean, the test results were not helpful, but there were a few little weird things that at least warranted investigation. As much as I have a whinge, I am generally an optimist, and in the car on the way there, we talked about the things I needed to remember (I am having trouble remembering things lately) and I was generally optimistic that the doctor was open and looking to actually help me out.

And this, kids, is why optimism can sometimes be a bad thing.

It was the TOTAL OPPOSITE. It was demeaning.

He sat me down and straight away said "Your tests were normal"

"Uh huh". (I expected that because I had received the results and they would be with the test he did). "So, what next?"

"You don’t have Cushing’s, but if you want we can order some 24 hour urines for when you think you’re high", which, with the tone in which he said it, basically implied that he was happy to hand me piss jugs to appease my hypochondria.

I tried not to overreact to this, and was prepared for it. The last time I heard "if you want" it was from the Obstetrician refusing to do growth scans on my baby who hadn’t moved substantially in 13 days.

I said that 24 Hour Urines will show normal for someone who cycles like I do. I am low in the morning and high at night, and therefore it won’t show up (this is true and documented in Endocrinology journals, not just anecdotally).

The second I had finished speaking I knew that I was going to get nowhere. I was also prepared for this.

I said to him that "It’s nothing personal, but I am being proactive and have ordered midnight salivaries from Pathlab, because salivaries are a better way to catch midnight cortisol peaks (again, documented in journals) for me – because my symptoms are worse at night".

At which point he pretty much lost all reasoning and lost his cool. I showed him the Pathlab forms and asked if he would sign for them so I could claim the tests on Medicare and he point blank refused, but said that he’d be willing to look at the results. OK then.

So I also mentioned that I was going to seek a second opinion in either Melbourne or LA. He said he was friends with the one in Melbourne and bascially then implied that even though he wasn’t bothered by me seeking a second opinion, that it would be a waste of time. Of course, I was still being a bit dumb at this point, thinking that I could somehow appeal to him. From this point on he pretty much made it clear that he didn’t want to see me anymore.

I got upset and asked him if there was anything else he can do. I also said that I am the one who has to live with this, not him, and that I am NOT pissing in jugs for a year when there is an easier way. All bets were off at that point. He became very aggressive.

"I think you are fixating on this ONE disease that I don’t think you have."

Now I have never, EVER been fixated on it being this one disease. I mean, in this blog yesterday I even SAID that if its not Cushing’s, then there is something ELSE that is similar, that I am OPEN to the idea that it isn’t, and I have never once suggested otherwise. In fact, I had come to the appointment today, ready to ask him for other tests to rule other, more common conditions out.

I said that my thyroid should probably be checked, plus other levels. He POINT BLANK REFUSED to do any more testing on anything other than Cortisol.

He kept saying "You don’t have Cushing’s". I finally snapped and said "THEN WHAT THE HELL DO I HAVE?"

At this point I burst into tears, and then said to me, sarcastically, "WELL THEN WHAT WOULD *YOU* HAVE ME DO?!"

"I would order midnight salivary tests and an MRI/CT". I told him that I have the cash to pay for an MRI and I was going to do it with or without him.

He then said "I am not imaging you because 20 % of people have tumours. And if we find a 5mm tumour you might think you have Cushing’s".

I snorted a little bit at this point…

"So, what do I have then and why aren’t you prepared to do any tests?"

He sat there for about 5 seconds, quiet, and then finally said "not my problem".

Quiet again.

"Look, chances are, we probably won’t know what you have.".

At this point I was SO angry at what I was hearing. I finally lost it and said "NOONE HAS EVER BOTHERED TO TEST ANYTHING! No ANA, No hormones, NOTHING. So how can you POSSIBLY tell me you don’t know what I have when you haven’t even bothered testing anything?"

I then asked if he could suggest a Doctor for me.

He said "go back to your GP, I am writing him a letter."

At which point I said that my GP was useless, he was useless, and I walked out. And paid the $115 bill.

So now, I am in a position where ALL MY FAITH IS GONE.

So not only did he deny I had Cushing’s, he flat out refused to test for any other Endocrine disorders despite a long list of symptoms which include me blacking out with seizures (3 weeks ago) and my heart showing problems again.

And now, I am just defeated.

Yet another doctor. Yet another session where I end up crying because noone is listening to what I am saying. I keep asking Jason if he is sure I am not a hypochondriac – and that I would be ok with it if he said I was. He insists I am not.

I am now in a position where I think my daughter has asthma, and I am too afraid to go see my GP because it all starts again.

What on earth did I do to deserve this?

But despite all of it, I am trying to retain my optimism. I am trying to see if there is a way to ensure that it doesn’t happen to other people… and I am trying to get more actively involved in Participatory Medicine campaigns. I have friends who are going through the same thing as me and you know, enough is enough.

I have money – I can pay for MRIs and tests out of pocket if I need to. Many can’t. Worst case scenario, I can go to Los Angeles and see Dr Friedman. Others can’t. Which gave me an idea to set up some sort of fund or group that helps patients like me to get to see good specialists. I will eventually be able to run this organisation, but also have a clinic. So it crystallises my future a bit more… but you know… right now, I just want it all to be cured.

Why I hate people who wear the flag.

by admin on January 22, 2010 in with No comments

I love my country. I also hate the people in it sometimes, mostly because I watch them bastardise and manipulate our traditional ideals of a fair go… and turn it into individualism, hatred and fear.

I loathe those “Fuck off, we’re full” (aimed at Asian & Middle Eastern Migrants, and predominantly adorrned on the cars of people from the UK & their descendants – IRONY!) and the “don’t love it, then leave!” (firmly aimed at anyone who has an issue with racists, or other “bleeding heart” Policy experts) stickers. I loathe the use of the Southern Cross as a tattoo. I absolutely recoiled in disgust at the vision of Pauline Hanson (not our most racist, but certainly our most stupid politician ever) wrapped in our flag.

Belle Taylor wrote this article today about reclaiming our flag, which is on the verge of being positioned in much the same nauseating way the American flag has been in the past. It is fast becoming a symbol of “like it or leave”, “with us or against us” nationalism, which frankly, makes me sad.

Because that’s not what it should be about.

My love for my country is private. It is not a competition and it is most certainly not proven by gross displays like flags (made in Taiwan by exploited labour in the Asian nations the racist sentiments are aimed at… it makes me sick thinking about it.).

I respect the flag that young men and women have died for (no matter how much I disagree with their fighting). When I sing our National Anthem, it actually mentions virtues such as tolerance, immigrants (in the second verse that these racist dumb fucks actually don’t bother to learn) and reward for hard work. You know, that whole nation-building stuff.

My love for my country is not an all-or-nothing love. If you see someone you love making a huge mistake, you sometimes need to express it. In fact, if you love someone, it’s your obligation to tell them when they stink.

Because you would always tell your best friend if they have B.O. because you would hope they’d do the same for you. THAT is how you love someone.

Loving your nation is not about displays, or gimmicks, or drinking, or fireworks. It’s about working towards trying to make it a better place. And to make it a place where everyone wants to come because they know they’re welcome.

The people who seem to contribute the least to this nation seem to be the ones that are the biggest culprits in flag-wearing. but it’s not enough. It’s just an excuse to act like a racist buffoon, get drunk, and harass the “do-gooders” who actually find your behaviour disgusting.

So yes, in part, it’s about taking our flag back. But it’s also about the “do-gooders” standing up, saying “NO MORE” and actually saying that tolerance, hard work, and welcoming those people without the luxuries that we have every single day is the gold-standard.

It’s about acknwoledging our Nations woeful mistakes (starting with acknowledgement that our Indigenous folk don’t like Australia Day) as well as our spectacular achievements. It’s about reflection, acknowledgement and yes celebration.

It is not Lemon Ruskis and a spa on the foreshore whilst wearing an Australian flag bikini.

And it’s about people finally saying “enough is enough” and egging the cars with those fucking stickers on them and calling people on it. It’s the only way to go.

On crashing to reality.

by admin on January 12, 2010 in with No comments

So, I think I have figured this whole thing out.

I have Cyclical Cushing’s – and with that, I cycle regularly between symptoms of Cushing’s and symptoms of it’s just-as-shit opposite Addison’s Disease. Now if you think having Cushing’s sucks balls… well… I’ve got news for you: I don’t believe there has ever been a scarier moment than this weekend when my cortisol levels crashed.

And you know, I have kinda been through some shit.

You know, 4 months ago I really just wanted to know why I was feeling crappy and gaining weight. I had a bunch of symptoms that on their own are fairly inocuous – reflux, ongoing weight gain, muscle weakness, burning face, crappy cycles, bad pregnancies… you know… silly things that age you faster but all in all, aren’t all that life threatening.

When I started to develop more severe symptoms like joint pain, fatigue and "roid rage" and had finally figured it out I was all "yay, I know what’s going on! I might actually start to look and feel like a non-mutant one day! I am cycling, I figured all out!" and I have to admit I was relieved, but not taking it too seriously because you know, my symptoms were annoying.

But, 4 months ago, I didn’t know what the fuck I was in for because now, my disease has started to progress to scary.

And it ain’t fun, or a relief, or anything anymore.

I have been feeling pretty ordinary for the last week, but for most of the last 3-4 months that I have been aware of Cyclical Cushing’s and have been noting the symptoms, I have been pretty much in a high cortisol, normal-cortisol-slightly-low-cortisol type of thing. It’s meant that the lows have been annoying, because I am tired and in pain and having trouble walking. But, it would pass after a day or so and I would be OK. I am still functioning.

But this weekend, there was a moment where I thought that I might not actually survive this.

For the first time I realised how serious this actually is… and how if I went to the hospital they wouldn’t even know what to do.

I knew the crash was coming, because Jason’s Worker’s Compensation claim finally settled after months of stress. I had planned for the stress to cause a crash at the end…. because that sort of thing has happened to me for most of my life. I laid fairly low on Friday, felt OK, so on Saturday we went to hang out with friends.

I was a little low, sore, tired, nothing I wasn’t used to. Bit flat but otherwise dealing… they swam, I swam, it was OK. Then, I got out of the pool and holy shit. All of a sudden I didn’t know where I was, couldn’t hold the knife to butter bread, had tremors and the most intense feeling that I was about to vomit and collapse at the same time. But, me being me and the control freak I am, just became fixated and upset about the fact that I couldn’t physically butter a bread roll.

My friends love me, but I am still trying my best to protect them from what’s going on. Mostly because if I let on, there is that tiny, tiny part of me that is afraid of being labelled dramatic, or whatever… and also that when I see them I like to pretend that I am not sick for a day. You know, like just pretend for one day a week that keeping my eyes open during a "low" is not a minute-by-minute struggle. And you know, noone wants to be the sick friend. They’re a drag.

So that moment passed relatively ok, some concerns of course, but you know… I just moved on in blissful denial, grazing on corn chips so I didn’t spew… and all was good. I had a couple of drinks and the word-slurring that went on in the evening led Jason to think that I had had more to drink than I actually had – all was good.

And on Sunday, holy shit. Got up, wasn’t feeling good, went to get some food, ate food. And what happened next I have absolutely no idea because somewhere along the way I had completely blacked out. I mean, I felt exhausted, but one minute I was sitting in my office, the next I woke up an hour later, in my bed, without clothes. I don’t remember anything. I don’t think I had a seizure this time, because I didn’t have that tongue-tingly thing, but I can’t be sure. I felt like death. I couldn’t move. I could only sleep.

And then I was fine again.

And then yesterday, I was fine, because I had a meeting to work up to, I had taken some stimulants to help me out, and then I got home, had dinner and then CRASH! for an hour again. Even on meds that are supposed to keep me awake.

I’m worried about the cycles becoming more extreme and more rapid. It’s now 13 days till my next endo appointment where I decide if I am going to Los Angeles or not.

I am trying to be as positive and whatnot as I can, but right now, I am just scared. Mostly because I know how bad Doctors have been to me in the past… and I have never been this sick before. So, now, I just want to go back to 6 months ago where I was a bit fat and a bit tired and had no idea what was going on.

I am a mess.

by admin on December 21, 2009 in with No comments

12:34am, the day of my endocrinologist appointment.

What a shitty day. I knew that I would be nervous in the lead-up to the appointment today, but holy shit… I didn’t expect ANYTHING like yesterday. There are no words to describe the uncontrollable and unmoving unrest & sheer RAGE I have felt. If I didn’t know why this was happening, I would be certain I was going crazy and would seriously, have taken myself off to Graylands voluntarily. Yes. That bad.

The good news, I guess, is that I am in a ‘high’ cycle, which means no pain for the last 3 days. I hope it’s high enough to catch in a blood test! The weirder news, just in case you thought you could read this blog and avoid the TMI stuff (jokes on you!)… my period that was 3 weeks late arrived today. The optimal time to test hormones & see what’s going on is cycle date 3, so I am a little bit "squee!" at the idea that things may just be obvious enough to get a diagnosis quickly.

I hope.

But of course, knowing what I do about the medical profession’s attitude about this, I am not going to hold my breath. Although the puffy face, the shoulder fat pads, the unbearable chin acne that shot up this last 2 days (all related to excess cortisol production), just MIGHT mean we can catch it. Jason is coming to my appointment to try and get through to the Doctor that I am really sick. Because I am terrible at getting that across myself. Hell, I can barely look anyone in the eye without wanting to rip their head off, so I can’t possibly think straight!

I have been thinking a lot about spiritual issues of late, wondering why on earth I keep being punished, despite being a good person. I don’t really have an answer for it other than if there IS a deity, that the only explanation for all of it is that I am somehow supposed to get treatment, so I can then go on and pursue research and cure everyone myself as a Doctor. I am not terribly religious, but I have to say that if things do go my way, I will repent like a motherfucker, because for the first time in about 15 months, underneath all the facial burning, the shadow-of-my-former-self and the telling my husband that he probably SHOULD kill himself because "hey, we have life insurance"… and hearing that like it’s coming out of someone else’s mouth … I feel some hope that things will work out.

Well, that and overwhelming dread, that I have not been able to get past, at the prospect of potentially not living to see my 35th or 40th birthday. And unbelievable paranoid, bipolar-like mood swings that go from complete and utter despair to tears, to screaming anger, all in the space of a few hours. I don’t recognise myself, but somehow I need to just know not to involve others and lock myself away.

Which, when you have hormones telling you to be a psycho bitch and seek out anyone to pick a fight… well… easier said than done.

But hey, at least the debilitating muscle & joint pain is gone, right?

My poor, poor family.

I was also reading up on some bits & pieces today in medical journals (what? you don’t do that?) and had a pretty scary revelation… about how lucky I am to have had 3 healthy-ish pregnancies. The worst outcome we had was Moo and his IUGR/Prematurity/Respiratory Distress… but it turns out… it could have been much, much worse if I had waited longer to have children. And I may not have been able to have them at all.

It turns out that the chances of Cushing’s patients conceiving, then maintaining pregnancy, are quite slim. But I have a theory about this one…. one that when the old genius-brain is restored and back to normal I will study and prove (among others)… and that is that because Cushing’s remains "dormant" for some time with cyclical or episodic patients and they get their diagnosis many years after being symptomatic… they are lumped into that PCOS/Hypertensive pregnancy/Atypical preeclampsia group and not generally followed up and not screened for Cushing’s. Like me.

In hindsight, my hypertensive pregnancies were probably in response to excess cortisol in my system… the blood pressure, the IUGR, the failed induction… the failed GD test but then back to normal….all of it. A broken feedback loop. And it explains why with my 2nd pregnancy, after hospitalisation at 26 weeks with preeclampsia, upon receiving dexamethasone… my BP returned to normal because it threw my cortisol down (it works like that paradoxically) and bought me another few weeks. It all starts to make sense. Each pregnancy progressively worse, the muscle waste, erratic protein & glucose spill… all of it makes sense.

So obviously, I am feeling introspective and philosophical about this whole thing right now, because initially where I only saw anger and hurt at people having not picked up my Cushing’s earlier… I am now feeling so very, very fortunate that I lived in ignorance for so long… that I managed to have my 3 lovely kids.

More and more, I also think it points less to a pituitary tumour and more to a tumour on the adrenal gland – given that I have had successful pregnancies, cyclical cushings and failed to suppress on dexamethasone. Will be interesting to see what it is, anyway. Oh and I also think my thyroid is fucked to boot. Yay me!

Ah the irony… when I was feeling low, I was angry and upset. Now, my body is screaming 100% anger & fury, I can now only feel some humility and optimism. That’s why I like to write this blog. It’s why I read medical journals. It’s why I like to understand everything that is going on, because on some level even when I am at my worst, I can take comfort in knowing that intellectually, there is an upside…. and that when this is all over, I am off to Medical school and I am going to help people like me.

And yes, I am a complete fucking headcase about today, in case you were wondering. But, you know… I am going to try and sleep… ok… well…. I am going to go and lay down & close my eyes, but not actually sleep. Same thing, right?

There’s a chance I will write again before the appointment, but if not, I will write later today.

In the name of MY children.

by admin on December 15, 2009 in , with No comments

I have a rule that if a Facebook status or Tweet is too long, it should go on the blog, so here goes:

You know, I wish that politicians would stop using MY children, and their so-called protection, as an excuse for pandering to the religious right. You know what? My kids surf Youtube. Unsupervised. Because I have TAUGHT THEM to have a fucking brain and know how to use the internet responsibly.

It’s this little thing called parenting – you know, where you need to make HARD DECISIONS about morality. HARD DECISIONS about education. HARD DECISIONS about how to turn them into decent, sensible & functional human beings.

IT’S HARD.

That’s why it’s called parenting and not “sitting idly”.

I am getting shitted off with this generation of parents – who paradoxically, on one hand,  thrust their neurotically over-parented, micromanaged, over-extra-curricularised precocious little turds into society with no social skills, thinking that they are so much more important than other people, unable to do anything without it being part of a program, or a structured activity… where, these batshit crazy people have somehow become NORMAL in the name of “protecting the children”.

These idiots purchase devices like wipe warmers, designer organic t-shirts for $200 and Mensa tests for their 2 year olds (who, by virtue of learning to sit up a whole month early, is the next Albert fucking Einstein)…

And then, on the other hand, also fail to do the basic stuff like, you know, teaching their kids manners, self respect and basic protective behaviours.

Because parenting is more than just veneers, gimmicks & products. It actually takes effort.

And our politicians have co-opted this idea in order to push through policies that pander to the smallest percentage of God bothering, anti-woman, anti-sex religious zealots whose immediate impulse is to kill anything they don’t understand, all the while slashing the real child protection funding and funding for domestic violence programs, you know the stuff where kids ACTUALLY GET RAPED & BEATEN ON A DAILY BASIS… putting greater and greater burdens on the teaching profession, the health department & the police force who deal with actual, real harm to children on a daily basis.

Ask any welfare worker how long their case queues are. In busy Department for Community centres, there are children that are at risk every day that have been queued for other children, who are at more immediate risk, because the Department can’t keep up with its caseload.

And then they use the protection of children as an argument for the filter? Are you fucking KIDDING me? I parent my children. I nurture my children. I love them. But you don’t trust me enough to make the right decisions for my children’s upbringing?

The internet filter is just more cotton wool for a generation of professional overparenting cunts, who use “for the children” as a catch-all excuse to police other people. It’s just another gadget, another smokescreen, to distract the dumb consumer yuppies from the real harm that this government does to children every day from it’s inaction and lack of funding.

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