the f word

Not the fun, four-letter f word which ranks highly in my list of preferred words; but the less fun, longer one that means questions with no answers and possibilities with no definites.

So I saw the doctor that pseudo-specialises in difficult stuff. He confirmed the diagnosis of fibromyalgia. He did do a couple more tests just to rule out a few other things but he is not expecting them to be positive. Clearly my heart and my veins thought these were not going to be useful tests as well, because they were doing their damnedest to avoid giving any blood for them. (How fucking screwed is it that the blood bank people won’t take my blood because omg tachycardia what if your heart pumps out all your blood at once and you die yet the actual reality is that extracting blood from me is usually a task accomplished by only the most skilled vampire phlebotomist.) Had to get jabbed on both sides and the woman actually had to use a syringe to suck the blood out since it did not want to flow on its own. I have a phone appointment booked for Friday to just check on those results, so we don’t have to drive all the way back to Coorparoo. The guy wrote a list of stuff that can be tried which sometimes helps people to feel better and less painy. In order to know if something is actually helping I can only try one thing at a time. The first is magnesium. The jar of stuff claims that it has a “natural orange flavour” but, ugh. It was disgustingly sweet. Like vitamin C pills dissolved in water with a few spoons of sugar added. I could not get through the whole lot yesterday, I think I am going to have to build my taste tolerance to it. Have to give it 3 to 4 weeks to see if it makes me feel any better and if it doesn’t, move onto the next thing. Which is probably also not on a prescription. So there is no PBS price or safety net or anything like that.

I’m unsure how I feel about this. The f word. (It just sounds cooler to say that.) On the one hand, you can say to people I have fibromyalgia and most people will at least have heard of it so there’s less explaining to do than trying to tell them that what SD is. On the other hand, fibromyalgia is essentially characterised by it’s lack of unique characteristics. The symptoms overlap those of numerous other musculoskeletal or rheumatological conditions. There’s nothing to test for, except for testing for all those other conditions and confirming that they aren’t there. Research into the causes and mechanisms of fibromyalgia is still very much in early stages and there is a long way to go before it’s properly understood. Theoretically, even, all the people who have been diagnosed with it could have five or ten or a hundred different conditions which they just don’t know about because they’re similar in presentation and no one knows yet where to look to differentiate them. And maybe that is why some things work to improve some peoples symptoms and not other peoples.

It’s very difficult for me to feel just acceptance at having something that cannot be explained. It’s not like it’s a new thing, because to a large degree, whatever is wrong with Stephanie’s legs is also not explained/explainable, and that has caused me just as much frustration. If they don’t know what is causing the problem, it is therefore also impossible to know that they are doing the right things to alleviate it. The best you can hope for is trying things that help some people and hoping they might help you. I suppose that this is valuable in it’s own way, in that it possibly contributes to the greater body of knowledge that potentially will one day lead to someone figuring it all out. When you (or your daughter) are in pain now, though, that’s not the most comforting thought.

It also gives you a bit of an understanding of what is considered an acceptable “cost” for your life or quality of life. While many people like to say that you can’t put a value on someone’s life, on them living pain free.. it’s simply not true unless you happen to be a gazillionaire who literally has no possibility of running out of money, ever. You reach a point where “they” say that it is not worth pursuing any further investigations or where a doctor can prescribe something that has research-supported evidence as being beneficial for you but it’s not recognised for support in the way that other medicines generally are. With Stephanie it was a refusal to do an MRI on her brain – the last logical place to look, having ruled out anything physical going on in her legs, hips, spine, immune system etc. Or, we could get the MRI done: if we paid almost $700 out of pocket. There are many, many people for whom that is just not feasible. As a parent watching your child learning to live with pain, it seems dreadfully unfair that the government/medicare – who could no doubt run the test for a much lower cost using their own equipment – won’t, while politicians get base incomes three times greater than the national average, as well as ludicrous allowances ($276 a night!) for things like staying in what is essentially their own (second) home while they’re in Canberra. How is that fair? Why do people who have more than enough money to opt-out of our national public health system get to determine limits to how far it goes to support the people who have no choice but to use it?


Another thing I’ve been feeling rather bitter about lately is this whole “pain management” thing. Recently a rule was introduced where any medication containing codeine now requires a prescription. Previously it was possible to get combination medicines with low doses of codeine over-the-counter at a pharmacy. Apparently, people get fucking high on that or some shit.. I don’t know, because I can’t imagine how you possibly could but that’s maybe because I only actually use them for trying to stop pain. But as a result of this change, there have been these ads popping up around the place saying things like.. “your local pharmacist can help you to come up with a pain management plan tailored to your needs” …. (now that we won’t let you have actual drugs that would actually take away your pain lolz.) The words “pain management” are a fucking joke. What it means is that they want to teach you to do things even though you’re in fucking pain, and not let it show that you’re in fucking pain, so that once you have mastered this skill they can pat themselves on the back and say look at what a great outcome you have without the need for medicine after all! and because they no longer have to see that you are in pain, they can tell themselves that you aren’t and that they fixed it and feel good that they did something benevolent and have helped stop the evil plague of opioid addicted losers.

If they don’t want people to use opioids, then why don’t they come up with an alternative that does not amount to grit your teeth, slap on a smile and walk it off? One that actually takes the pain away. Not just makes it appear to everyone else that it’s gone. “Pain management” is not for the person in pain, it’s to reduce the exposure of everyone else to your suffering. Because suffering is a weakness and this world hates any form of weakness.

the f word

Protected: second

Hello, friend! This post has been password protected for the following reason:

With a rebel yell, she cried..

Usually I will be happy to tell you the password if I have at least some inkling of who you are, or sometimes there are clues in the reason. If you have trouble, just ask.

Protected: second

i believe

i lay.

i am facing my husband.

my hand rests on his chest, over his heart, and he holds my hand in place with his own.

my skin is damp, and the breeze from the rainy weather outside is cooling and refreshing.

my heartbeats and my breaths are accelerated, but slowing,

and i hear the sounds of cars passing on the wet roads

and daniel’s soft almost-snores as he dozes

and I wonder yet again at how magnificently unlikely

and stunningly divine this scene is.

a baby boy is born in copenhagen in november 1979.

almost a year later in november 1980, a baby girl is born in melbourne.

they are not even learning to speak the same language,

and even if they did, international telephone calls are still an uncommon and expensive thing.

the technology that would one day evolve into the modern internet is at the same infant stage of development that the danish boy and australian girl are.

how could you see these two babies, and ever imagine that enough changes would happen in the world for them to find each other? for it to be relatively easy and cheap for them to communicate with each other daily, from home, and get to know each other well enough that they could fall in love?

for a lot of people, the marvels of modern technology are a cool development that provides a lot of opportunities to enrich their life. for us, the marvels of modern technology are but one of a series of events that were crucial for us to end up where we are, now.

to consider the relative probability that any of those events would happen — that all of people involved were in the right place at the right time with the right ideas and skills and resources — let alone that all of them did happen, seems like we have played a lottery with astronomical chances of success.. and won, an embarrassment of riches.

it makes me believe.

it’s not god in the christian sense, or even god in that i see it as a deity, discrete and apart from what we are.

but i can’t feel the beating of his heart and of my own heart and not believe that something, somewhere, guided us to each other.

i believe


Been feeling a bit .. well, a bit of lots of things. We went back to the doctor, Mum needed some prescriptions and I had to see what those blood tests from last week turned up. Or if they turned up anything. And, well. They did. Just not where I was expecting.

He did a range of antibody tests including ANA, and they were all negative. This rules out a lot of autoimmune/rheumatic conditions. The two things that were not negative were my ESR and CRP. (In fact, I have never had a blood test where those two things were within normal ranges.) Of course, these are very non-specific, and when you feel like I do but are negative on everything except those, what does non-specific equal? Fibro. Which pretty much nothing can be done about. Well, some people reckon certain antidepressants can have an effect but I’m already on a pretty high dose of one, so. He did give me a referral to a different doctor, technically just a GP but he’s specialised in seeing people with Chronic Fatigue, Fibro and other “we don’t really know what’s wrong with you so let’s just give it a name to shut you up” type conditions. So I will get myself to that guy and see if he can tell me anything different.

Only thing is that’s actually the “good news” part of the whole escapade. Turns out some of the general tests they just run for fun when you get blood tests flagged some really bad results for liver function. He says the most common cause of this is fatty deposits in the liver. I am having an ultrasound this afternoon to look and see if I have such deposits. Basically you fix it by losing weight. Ok, I said. Let’s assume it does turn out to be this. I am not opposed to exercise, but the reason that I do not do as much as I could or should is because I fucking hurt all the time. See: “fibro.” It’s really fucking difficult to motivate oneself to be that active when doing it leaves you in large amounts of pain or almost not able to move. In which case, he says, you basically have to attack it by a diet of starvation. Eat nothing nice, ever again, he said. Ok, he didn’t say that. Go extremely low carb, he said. “No potatoes, no pasta, no rice.” Oh, NICE, you just listed three of my four favourite foods. The last one being chocolate which is also not really recommended.

I don’t really mean this, really, but.. part of me almost hopes I have some kind of fucking tumour and it’s just simple old cancer which they could cut out and then my liver could grow back and everything would be fine. (I know cancer is not simple.) I would not describe myself as a carb junkie or anything, but.. most of the things I eat feature them in one form or another. Potato is my default vegetable. I love potato. I love pasta. I love rice. There is an anecdote about me, when I was maybe 10ish or so, my grandparents took me out for dinner with them to the Big Pineapple. It had a smorgasbord. They were kind of horrified and embarrassed when on one trip to the food section resulted in me returning with a bowl full of plain white rice. Apparently, it is supposed to be an accompaniment to all the other stuff there. A side dish. What-the-fuck-evs. I like rice.

So switching stuff up and cutting out carbs is a pretty fucking radical thing and it seems like a really fucking cruel twist from the universe. I already don’t drink and don’t do drugs. I already struggle to find a single meal that I can make to feed five people, and I am the most agreeable out of us all. I recently got really strict and said that people have to have what is cooked or else they go hungry. I made them write me lists of things they don’t like. If a thing is not on the list then they are not allowed to decline to have it. If they only like part of a meal then they are expected to eat all the parts they like and we will compromise on the rest. And this isn’t going too badly. So, hey. LET’S THROW A FUCKING WRENCH IN THAT. And on top of that, switching out to all vegetables all the time is going to be an expensive switch. Ok, there can be meat too. Lean meat. (Which I am pretty sure does not include bacon. Assholes.) But again, meat, not exactly cheap. And me, not exactly in full operating order and able to whore myself out in return for currency.

Who wants to feel like a fucking burden?

The reason this NAFLD is a problem is because it’s basically an early warning for further damage. Like developing into full on cirrhosis and liver failure resulting in death and/or increased risk of hepatic cancer. Of course, I did not need elucidation of what death by liver failure looks like. And I don’t want that to happen. Trying to assume that it will be this NAFLD which is the least bad outcome and yet it represents such a huge fucking change. To 37 years worth of taste and diet and cooking. To forcing me to have to double up on meal preparation. It would not be a stretch to say I am feeling rather unfairly personally victimised by my liver right now. It’s not like carbohydrates are bad for you. It’s not like it was a known unhealthy thing that I could have made a choice to not do. Everyone eats sandwiches. Everyone loves a nice spag bol. (Fine, not everyone. But most people.) I have chosen to avoid the things that they tell you are bad. I don’t drink. I don’t do LSD or heroin or even fucking weed. I wear sunscreen and avoid going out during peak UV times. I wear a seatbelt. I wash my hands after I pee. I don’t drink a whole lot of soft drink and I especially don’t drink the ones with artificial sweeteners. Ok, I do have one cup of coffee each morning and I do eat some chocolate. But I didn’t expect that was going to make me have a serious liver problem. And yes, I do not do as much physical activity as is recommended. But as I already pointed out, there’s a fucking reason for that.

Sometimes I feel like it would just be easier to die. I’m not suicidal. I’m not looking to go and kill myself. Just seems like it would be less complicated for all involved if I do have something that is going to take me out. But I am scared. Not of dying. But of Daniel not being there. Living or dying, hugely scary things, except for when he is there with me. His hand is the difference between the cowardly lion and the fearless warrior.