Archive for December, 2009

I am a mess.

by tealou on December 21, 2009 in Health with 1 Comment

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.

It’s NOT in my head.

by tealou on December 15, 2009 in Health with 2 Comments

6 days till endocrinologist appointment

OK, so technically, given that its a TUMOUR! in the BRAINS! OMFG! BRAIN TUMOUR! it is in my head… stop being so pedantic… I realised that it’s not the days that I am sick and sore that are the biggest indication of how sick I am, but actually the days I am well.

Yesterday was a really shit day. I mean, REALLY shit. Emotionally, physically, mentally… just… not good. And it got to a point where I was thinking "GOD WHAT AN EMO" and thinking of taking the blog down, thinking that noone really wants to hear me whinge every day about the pain, and that people are thinking that I somehow thrive on the drama or something.

Of course, that’s the disease talking, but you know, I do reflect on why I am even writing this.

Here’s why:

Our GP is a nice enough guy, personable, and well… he’s been our GP for 9 years. In that 9 years he has ignored or dismissed pretty much every single thing that has gone wrong… even going so far as to say, after I had JUST recovered from a botched lap banding and was dismayed at gaining weight and not knowing what to do, that "there is still the surgical option".

Hear that? That’s a head against a brick wall.

My husband, a bus driver, was injured at work 5 months ago when a car pulled in front of his bus. He still isn’t back at work because his pain is excrutiating. Our GP seems to have a thing for telling people their pain is psychosomatic and Jason is no exception, because he told Jason that his shoulder pain was "probably exacerbated by his anxiety". This is after 3-4 months of physiotherapy, major doses of painkillers, and not seeing any improvement.

You know, because the pain was just all in his head.

Not injured.

Now obviously because we have a pending lawsuit I can’t say anything other than he’s actually really injured and the GP keeps banging on about a Psych even when he’s proven wrong…

He has missed every single serious ailment that we have gone to him about over the years, because he has a blinkered view of it all being in your head. And for some time, I really started to doubt myself, and still DO, because I have been treated this way for so long.

As mentioned before, there’s been a pretty rapid decline in my condition in the last 3 months, but there is about 1 day in 14 where I actually feel well.

I can walk without pain. I can concentrate. I am actually smiling and in a good mood and not picking fights with people. And that’s when I realise that it is NOT in my head. Because who would CHOOSE to feel like I do, even on a subconscious level?

On the days where I am feeling well, I am my old self – working, laughing with the kids, cooking, getting shit done… and then WHAMMO! Can’t move for the pain, exhausted, forgetful, jittery… you name it. Nothing changes from day to day to cause such a rapid switch in health because you know? Given the choice I would like to be able to stay awake, walk around, and not be in a flaming rage all the time.

So having a good day today certainly helps to remind me of how I CAN feel… how it is not psychosomatic, it’s NOT normal, and it’s not denial about what I eat. It’s just Cushing’s.

And the reason I write this blog?

Because when I go to medical school in 2 years and become a Doctor myself, after getting well, I will have this blog here as a reminder of my journey… hopefully as a reference for someone going through a similar thing down the track who need the confidence to tell Doctors it’s NOT in their head (but is… actually… in their head… lol)… and most importantly, so I never, ever forget what it is like to be a patient who is not believed by a Doctor.

And hopefully I can go some way to being the kind of Doctor that I would want to visit.

In the name of MY children.

by tealou on December 15, 2009 in Parenting, Politics with 30 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.

Psycho. Cripple. Flake. Whinger.

by tealou on December 14, 2009 in Health with 4 Comments

7 days till endocrinologist appointment.

It’s not funny anymore.

You know, after being unwell for a number of years, I often fantasised about them magically finding a reason for why… I thought that my life would be "fixed" as soon as we figured it out. That I would suddenly start on a journey to wellness and be well, and the fun of figuring it all out myself would be exhilarating.

But you know, the emotions around how I feel suddenly having a name, knowing the prognosis and treatment.. and knowing what’s ahead… even though I am a little bit relieved, I am also having trouble coming to grips with it all.

I feel a lot of anger. Uncontrollable anger, of course, being a symptom of Cushing’s as well so it’s understandable (will get to that later)… but… yes. Lots and lots of anger at how this could have gone so long without being noticed. I am hoping that with treatment will also come forgiveness and help me to move past it… but right now I just feel anger.

Every day is a challenge – partially because of the rapid progression that I am facing, and partially because there’s just SO much stress external to my illness, on top of it, that honestly? I am surprised I haven’t gone postal.

But I kind of have. And still might yet…

Psycho.

Because I am not myself. You may as well nickname me Charlie, because I am part of a Flowers for Algernon-style brain regression that, quite frankly, is scaring the shit out of me & Jason. I am still functioning, sure, but I am nowhere near the level I used to be.

I have gone from having a photographic memory, and razor-sharp recall to the point of never needing an address book or calendar… being able to commit a million things to memory very quickly… to being a bumbling mess, completely dependent on my calendar, forgetting what I was saying mid-sentence, forgetting how to spell & type (well, not completely, but… having to stop and focus on it rather than it be automatic)…. as well as…. and here’s the scary part…. forgetting entire conversations.

What’s more, the high cortisol causes me to be paranoid, angry and seeing/hearing aggression in everything. I once woke up at 2am FURIOUS for no reason at all.

Which has been fantastic for my marriage, I might add.

Cripple.

And I can barely walk by the end of the day. My lower legs and arms hurt so much that I walk like I am 80 years old.

I bought a cane to use at home. Although it will be a cold day in hell before I use it in public. I would rather not go out than have to be visible like that. I mean, I have so far had to deal with not being as alert as usual and have so far managed to hide it. but a cane? That’s out there. That just screams "I AM BROKEN!" at the top of my lungs… and right now I am not willing to face the fact that I sometimes… can’t walk.

Flake.

My biggest concern and fear right now is that people might make judgements about my capacity to run my business or do my job before they even talk to me. I mean, I am laying out all of this on the Internet, posting it on Facebook, so my capacity (or lack thereof) is certainly open to interpretation… but I guess that all I can say is that so far, despite some pretty scary shit, I am still getting stuff done.

It’s the luxury of a home-based desk job, where as long as I have most of my faculties, I can still deliver. The nature of the disease is also that there are periods where I achieve a lot… and then periods where I just need to rest. I am learning to be kinder to myself and NOT work 18 hour days… but also to just accept that there will be days where I will not achieve much… but then there will be days where I will get everything done… so it all evens out in the end.

Obviously the pressure to be the sole income earner for my family doesn’t help my condition, but in a way, my work is also a welcome distraction…. because I love it. But when it becomes an issue, I will start to communicate that, but I am worried about the consequences… because, you know…. business is brutal.

Whinger.

I am so over MYSELF right now. I have realised that I have become THAT person that is always in pain, always tired or depressed, and that boring person whose sole focus is surviving another day without breaking down. I have to be kinder to myself and realise that it’s OK to be unwell… but like all long-haul illnesses, people fall away pretty quickly after the initial dramas.

It happened in 2006 when I was in ICU – everyone was around when I was in a  coma, because THAT BIT WAS INTERESTING. But you know, the support falls away over time, and you just become that person that people avoid because you really don’t want to hear about how tired THEY are, with their normal bodies, and normal problems… and end up just being a recluse… because that’s just easier than facing the unfairness of other people never knowing what true, relentless exhaustion feels like.

I am sure they mean well, but you know…

Like right now, as I type this, my face feels like it is on fire. Yes, like BURNING FIRE. It goes from burning to freezing to numb. But you know, noone wants to hear it. Even doctors roll their eyes when you mention your symptoms and they are supposed to be scientists! Try telling a family member who didn’t finish Year 10 that when your skin is burning from hormones it is not a matter of taking off a jumper, or drinking water… or in the case of weight gain, just eating less. It doesn’t work that way…

So I just end up feeling frustrated, misunderstood, and better off if I just hang out on my own. Because loneliness beats well-meant-but-kind-of-offensive advice any day of the week.

And even as I write this blog post, I know that very few people will actually read it… because you know, it’s hard. I know they’re tired. And stressed. And Christmas is stressful… it’s all relative. But you know…

Part of my coping is that I remind myself that it could be worse.

It could be worse.

But it could also be a hell of a lot better. And then I wonder how much worse it needs to be before I actually get to complain.

The elephant in the room: it’s time to talk about weight gain.

by tealou on December 8, 2009 in Health with 1 Comment

I have decided that I am going to focus on the fat thing first, because, you know, it’s kind of the most obvious, but also the most hard to talk about symptom for me. So I may as well get it all out there, talk about how I feel about my body, and also try to document this for those who will probably notice some significant physical changes in me and may feel embarrassed, or worse, judgemental, about how I look.

Right now, I am huge. IT IS NOT MY FAULT. There is NOTHING I have done to cause it, and nothing I can do about it and yes, I will be fat until they find the tumour and take it out. And as much as it scares me to say, I may even get worse before I get better.

My body is a symptom, just like the seizures, the pain, the weakness, the vision problems, the giant hands & feet, the infertility, the severe anxiety, the confusion and malaise, the tremors (which I manage to hide from people pretty well… watch my hands… :) ), the high blood pressure. The fat is a symptom.

However, up until now I was convinced it WAS my fault, so it’s been very hard to de-program from that.

So first, a little background. A few months ago, after yet another experience of complete dispossession and humiliation at the hands of an Obstetrician with a sub-specialty in Bullying (I still want to name & shame… uggggggh), I was feeling defeated and wrote this blog post. It had all culminated in me just trying to find a way to accept that I was always going to be this way, they were never going to believe me, and I was trying to forge a way forward and accept my body. Then I got sicker. A lot sicker.

But this has been happening for years. Before I was here, writing, admitting that I was sick in such a public way, and before I had figured just what the hell was going on with my crazy body – hell – before I was even a proper adult, I got fat. And I got fat fast.

I was unwell a lot as a kid, and had lots of “strangeness” – seizures, ballooning weight, severe fatigue, intermittent ADHD symptoms, things like that… and around the age of 18, living away from home, I gained 55kg over a 9-12 month period. I never really knew why, because nothing had changed. I was also at this time having seizures – between the beginning and end of 1996 I had had 4 seizures – with the worst being that New Year’s Eve when I fell and whacked my eye socket on the bathroom tiles.

And me, Miss 162 IQ with bucketloads of enthusiasm and potential and a shoe-in for any University course I wanted, could barely function. I put it down to working nights, but deep down I knew it was more than that… but you know… noone believed me. So, out of Year 12 I flunked.

And, you know, because I was pretty much alone, with no parental support, I am kinda angry that noone gave enough of a fuck to notice… because in retrospect I have been sick for TWENTY YEARS. Probably more. But, moving on…

I saw a Doctor. Because seizures aren’t normal, right?

It is actually incredibly difficult and emotional for me to write about, because I have spent the better part of 12 years being ignored, bullied and snickered at by Doctors who insist I just keep a food diary, or go for a run… or… mutilate my body… because I must be a liar. Or ask if I would like a referral to a nutritionist. When I first gained the weight, I would say “No, Doctor, I am vegetarian. No, Doctor, I don’t eat much. Yes, Doctor, I watch my carbs. Yes, Doctor, I actually walk everywhere because I don’t have a car. Sure, I have the occasional crap because I work shifts and… but… oh… it’s that occasional crap that’s causing this? Oh yes, you’re right, I am completely to blame. Sorry for wasting your time.”

And you know, lots of that, where anything other than absolute diet perfection was an out for every Doctor I saw… was a way for them to convince me that somehow, I was to blame.

And that was pretty much a pattern.

Children born, each pregnancy progressively worse (cortisol DUH), sick between pregnancies, diangosed with the fat-sick-in-chilbearing-years-catch-alls of PCOS & Depression, with every single symptom attributed to my clear overindulgences and non-compliance, and eventually being so beaten down and convinced that I was lying to myself that I got a lap band.

Which nearly kills me, due to a stray scalpel on my stomach that perforates it, causing my stomach contents to leak into my organs. And I gain 7 kilos on a diet of IV feeding, ice chips and Nilstat. Inbetween shitting myself and vomiting from the pain of a collapsed lung, of course.

And you know what?

I go to an Endocrinologist, apparently one of the best Endocrinologists in Perth, who, after all of this, reverses the PCOS diagnosis, doesn’t do any tests, and says that I should just go on a low carb diet.

IF ONLY I HAD THOUGHT OF THAT.

Oh, my mistake, they were giving me the HIGH CARB ice-chips and the chocolate thickshake TPN in that central line when I was spewing up lung fluid for a month. That’s where I was going wrong this whole time!

And that is just one example of the hundreds of times I have been treated poorly by Doctors. And trust me, every single one will be getting a letter.

So how I *feel* about the body I am in right now?

Pretty shit, actually.

When it’s not hurting, it refuses to move. When it’s not refusing to move, it’s making my life embarrassing. And of course, knowing how I really look underneath this does play on my mind, because I am treated differently to how I behave.

I feel anger towards people who make MY day harder because they actually do eat donuts and icecream and don’t get off their arses. Up until a couple of months ago I was still pretty active, and I still try to be on days when I don’t hurt. I do feel some resentment towards those people who COULD be healthy and yet choose not to be. Because I try so hard and still get lumped in with them.

I am not exactly saying that it is RIGHT to feel this way. Because you know, how other people treat their bodies is their business… but you know, I do feel that way and need to find a way to be more compassionate.

But I feel like I have made SOME headway. I don’t think my GP believes that I am sick, really… mostly because he doesn’t see my day-to-day struggles with mobility and pain and just how hard I work on not gaining weight… and you know, if it makes people more aware that fat may actually be a symptom for someone they would have ordinarily judged, then I guess that’s all I can hope to come from this.

I now need to get some sleep in before my hormones tell me to wake up again (whole other post).

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