Archive for January, 2010

Half full glasses, self doubt and… arseholes.

by tealou on January 25, 2010 in Health with 10 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.

I have no idea where this is going, but I needed to update.

by tealou on January 24, 2010 in Health with No comments

Prior to all of this Cushing’s business, and after being treated abhorrently by an Obstretrician that resulted in the premature delivery of my 3rd baby… I was starting to head into a good place… or at least, an understanding with my body.

There were always just these "odd things" going on with my body that I could never explain. My body never responded to diet & exercise the way it does with other people; my body would always make sure I got postoperative infections; my body would grow extra electrical pathways in my heart causing an arrhythmia; I had trouble conceiving my children…. and you know… just…. other weird stuff that you don’t really think of until a picture starts to form.

Up until October 2009 (when my symptoms just hit and I headed on this major progression of disease), I really just thought I was doomed to a life of little ailments. You know, gall bladder removal here, catheter ablation on my heart there, lung collapse here, D&C for painful periods there… you know, just… lots of… ailments.

And then, all of a sudden and I was plunged into a year of severe, unrelenting stress and my body said "FUCK YOU I AM GONE" and my adrenal glands decided they had had enough and since then, they never call or email… and just pop around occasionally to punch me in the face and then leave again.

And it took a Doctor friend of mine saying in a social setting, that Addison’s disease can cause a lot of my symptoms that sort of led me to revisit it’s evil twin, Cushing’s.

And you know, there are days when I still majorly doubt my self diagnosis, despite a 20 year journey of finding out what the hell is wrong with my body that is causing all these "ailments"… I still default to the idea that Doctors actually know what they are doing.

But it’s not the fatigue. It’s not the weight gain. It’s not the preeclamptic pregnancies or the quite obvious muscle wasting that is going on. Those symptoms ARE easily explained away by at least 50 different illnesses. And honestly? if I walked away with a diagnosis of fibromyalgia, or Hashimotos, or Lupus, or whatever the hell else… and the Doctor actually had made the effort, then that’s fine.

Because you know what? It’s not easy at all but if I am fat for life, I am fat for life. I have reached a level of self-acceptance about it, that as long as the Doctor can backup his diagnosis, then I walk away, a little embarrassed at having self-diagnosed on the internet, but eventually getting over it and just learning to accept myself.

But like I said, it’s not the big, generic symptoms that have led me here.

Prior to this, I always just assumed that I had some form of SLE (Lupus) that was attacking various parts of my body. It was not even close to being a fit, and Lupus attacking the brain is even rarer than Doctors claim Cushing’s is… and it was never a full fit. There were things that I just didn’t have, but because there was not really any other explanation, I kind of just decided to see how it progressed.

But of course I knew it wasn’t.

Even 5 years ago, when I first started reading about all things endocrine, Cushing’s seemed like a better fit. It explained so much… but because I didn’t have what I thought was the definitive body type… it was always momentarily considered and then dismissed. Because noone wants to go to a Doctor claiming that they are an atypical case for a rare disease. That’ll just make them laugh you out the door with a script for sugar pills.

But, over time, it would keep popping up every time I tried to figure it out. No hump, no moon face, no thinning arms. Momentarily considered, dismissed.

See an Endocrinologist who suggests Cushing’s and then does not bother testing because I don’t have the Cushing’s body type. Dismissed.

And then I got sicker.

It started to feel more urgent, and then I read more and found the Cushing’s Community and it turns out you don’t actually HAVE to have those physical features and most Doctors, having no experience with Cushing’s, and generally having had 5 minutes dedicated to it in their whole medical training, tend to refer to images of 1 case, with all symptoms, in what would be considered Stage IV Cushings if it were cancer.

So for those at Stage 1, 2 or 3…. they are fobbed off for years until the disease progresses to the point where they can’t actually ignore it.

I was gobsmacked to find this out…. because comparing my body to ACTUAL REAL LIFE CUSHINGS PATIENTS, with confirmed pituitary tumours, instead of a diagram, HOLY SHIT BALLS THAT IS MY BODY.

But you know, I mentioned that it’s not just the big stuff. It is the tiniest of tiny little upsets, where altogether, they equal one thing… I gather little snippets of information and I am boggled at how upset my whole endocrine system is by this one tumour.

It’s why I can’t eat straight carbs without feeling sick, but if I balance it with protein or fat, I am fine. It’s why I can be handling stress so well for months that I am immune to it and even thrive on it one minute, and then plummet into an emotional wreck over the dumbest things at other times. It’s why I am dependent on Caffeine & other stimulants. It’s why alcohol makes me sick. Its why my face frequently feels like it is on fire. It’s why I go from craving social contact to not even wanting to be around my own children. It’s why my singing voice can be pitch perfect one day and completely off the next. It’s why my induction with my first pregnancy never worked. It’s why I have a sitting body temperature of 35.2 degrees and why I get infections & have slow healing sores at one time, but in times of stress (like said premature birth, I heal miraculously). It’s why my heart is having problems, it’s why my stomach conspires with satan to have a crap in my throat from the reflux. It’s why I suffer with acute liver pain that lasts for days, it’s why I get flank pain. It’s why I get angry in my sleep and scream. It’s why I get IBS symptoms. It’s why I gain weight despite best efforts. It’s why I have poor vision somedays, and good vision on others. It’s why my eyeballs twitch. It’s why I lose control of my hands. It’s why I can’t sleep, and when I do, it’s restless. It’s why Prozac, Lexapro, Citalopram, Effexor and the countless other crap that I have been given doesn’t reduce my anxiety. Because my anxiety is not neurological, it’s hormonal. It’s why Metformin didn’t work, and Duromine & Dexamphetamine still made me gain weight and make me sleepy. It’s why I have never had a sex drive to the point where my husband thinks I don’t love him.

And that is just 35% of the day to day crap that Cushing’s explains. But, you know, my arms aren’t thin so here I am, with a burden of proof that no patient should have to have. I am competing with a diagram of a Cushing’s patient from an ’80s medical textbook.

Because it’s not normal to have pain and this many ailments at 30 years old. It’s not normal to eat better than everyone else you know and be 3 times their size. And it’s not normal to be able to rattle off a list of shit like that that is 35% of your symptoms and have a Doctor go "it’s just cuz you are fat. You need to be less fat".

So yeah, I have another Endocrinologist appointment on Monday. I am requesting an MRI and a plan to catch the highs. I have recevied my salivery tests from Pathlab, with the intention of trying to get some midnight cortisol readings that help my case. i am going to the Doctor and asking him why he is so afraid of MRIing my pituitary gland and having a CT of my adrenal glands… and if he says "but 20% of people ave inactive pituitary tumours" I will say: FUCK YOU DOUCHEBAG and refer to the 80 or so symptoms and say GOT A BETTER IDEA?

I owe Google my life.

For some reason I felt compelled to document this

by tealou on January 24, 2010 in Uncategorized with 2 Comments

Welcome to saliva overshare!

I need to spit in this container. Avoiding bubbles. Which is harder than you’d think.

This is the first of my midnight salivary cortisol tests, where hopefully we can catch that tumour doing it’s work.

Why I hate people who wear the flag.

by tealou on January 22, 2010 in Politics with 6 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.

When patients get proactive.

by tealou on January 15, 2010 in Health with No comments

I have been pretty down in the dumps since my last appointment with my endocrinologist. I have felt like I am getting worse and, frankly, don’t feel taken very seriously. I had pretty much resigned myself to repeated tests that involve peeing in a jug, over and over and over again, whilst simultaneously being lectured on the evils of carbohydrates-and-would-you-like-to-see-a-nutritionist that I felt a bt like giving up, letting the disease progress… and then letting them get a diagnosis if it progresses to a debilitating stage in a few years.

Of course, me being me, those thoughts didn’t last very long… and I started doing some research about Participatory Medicine and Health 2.0… it made me feel a little bit better that there IS a movement within the medical community to support patients that are proactive and better informed.

Anyway, even though it might seem backward (unless, of course you know me and know that I ain’t stupid) I subscribed to the Australian Pituitary Foundation, hoping to receive some information and just be able to connect with others, who have dealt with a very conservative Australian medical system and have spent a long time getting someone to recognise their disease… often not until the very late stages when symptoms are so obvious they can’t be ignored.

So I paid a few bucks to join, and I heard from them this week. Wow, what a difference a support network can make. I mean, there’s the US-based folk, but their system is very different from ours… so to have an Aussie reach out who has been there was quite incredible. I mentioned my frustrations, I mentioned my plans to go to LA, and she suggested that there is actually a really good Endo in Melbourne who is pretty well on the ball with Cushing’s.

I am going to Melbourne for the Comedy Festival, so I decided to make an appointment for the week I am there with someone who is *interested* rather than *inconvenienced* by the HPA-Axis. I also found out that you can pay privately for an MRI… I thought that you couldn’t do that, but apparently there are places where you can get a referral from your GP and pay to have one done. And, you can order the midnight salivary tests from Pathlab for $20 each.

So it turns out, I am luckier than I realised because you know what? I actually have the money to do these things.

And so that’s what I am going to do. I rang Pathlab & ordered 10 midnight saliva tubes to catch the high cycle. I rang St Vincent’s Endocrinology to make an appointment for when I am in Melbourne. And I plan on having those results when I go.

I have another Endo appointment on January 25th, and I am going to tell him like it is. If he won’t order an MRI/CT, then I will get one myself. And then, when I have the evidence I need, if I need to fly to Melbourne a few more times, and have surgery at St Vincent’s… so be it.

It got me thinking about participatory medicine, or “eMedicine”, or “Health 2.0″ and I am excited about this as a concept… and think this may well be where my future efforts lie. Support groups are amazing with rare disorders, and today, I actually feel empowered rather than afraid and helpless for the first time in months.

When my Grandad died of Creutzfeldt-Jakobs in 2007, my grandmother felt SO alone. He was literally one in a million, died a horrible, painful death… but she just had to move on, with no support, no understanding – and quite honestly – some very insensitive treatment from Royal Perth’s research doctors. I donated to the CJD Foundation in his name for Christmas that year, and the support group reached out to her because of that. I had found them online… It helped her heal. It helped her to understand, and it helped her to talk to others who had been through the sort of ordeal that noone else understands.

And yet Doctors fight this type of communication, dismissing it as “oh did you look on the internet didyayouidjit”… but really, when you think about it, it’s not so much about self-diagnosis for hypochondriacs, but there are actual, legitimate sources of information and community for people who feel alone and desperate and need to know that it ISN’T in their head, and that 95% of the time, the Australian medical system fails people with rare and chronic disease.

So you know, for me, if the choice is between feeling desperate and alone and feeling empowered and knowledgeable and temporarily labelled a “cyberchondriac”, well, the choice is pretty clear… and I just thank my lucky stars that I am a) born in a time where these communities exist and b) have the money to make active choices. I feel for those that don’t.

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