Woo By Association

It’s possible that, with a PhD in genetics, I consider myself to have more than dipped my toes in the streams of science. As a person with two chronic illnesses (and that’s not counting endometriosis: I’m fortunate that it appears to have been resolved via laparoscopic treatment), I am a hearty and enthusiastic fan of evidence based medicine. I believe in expertise and expert advice.

As a person who has had a slew of sub-par doctors and who now has an excellent medical team, I also know that sometimes expertise is no defence against error, oversight, dismissal and short-sightedness.

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Sick But Not Sick Enough

I am both fortunate and unfortunate in the challenges my body has thrown my way. On the one hand, I have confirmed Crohn’s Disease of the small bowel and (semi-diagnosed) Ehlers-Danlos syndrome (hypermobility type). I have Seasonal Affective Disorder (I get miserably lethargic and non-functional in winter). I’ve had endometriosis.

These are not good things.

But on the other hand:

  • I am cashed up enough that we can afford tools to mitigate my S.A.D. (sun-lamp, sunrise alarm clock, redecorating to make house look bigger and brighter and so that more light reflects off surfaces, also going on holiday to warmer sunnier places in winter).
  • My endometriosis case fell into the two-thirds of cases that actually are resolved with a single laparoscopy. I no longer have symptoms.
  • My EDS is a moderate presentation (partly due to the fact that I was a sedentary kiddo and thus did not accumulate long-term connective tissue damage like a more active kid might have done. This is a feedback loop – moving was awkward and painful, which is why I was a sedentary kiddo…) so I can do a lot of things that more severe sufferers cannot. Even more, we’re financially secure enough that I can afford to work casual/part-time so that I have more time for the extra exercise and sleep required to manage EDS. And we can afford physiotherapy, clinical pilates, gym memberships, etc. without worry.
  • My Crohn’s Disease is solidly in the “mild” category. It’s only in my small intestine. It’s scattered. There’s little to no scarring, only limited narrowing, and no real risk of obstruction. I don’t have chronic diarrhoea. I don’t need a stoma. I can still absorb enough nutrients (not efficiently, but I can do it). Mild Crohn’s is still no picnic: I am in pain all the time when I’m not taking something to manage that pain, I have secondary carbohydrate malabsorption due to my inefficient gut, sometimes I feel nauseated after eating (less so when I’m on keto), and currently I’m dealing with monstrous fatigue issues possibly due to B12 absorption problems, but otherwise, I’m dandy.

Number four is the topic of today’s post.

Since my diagnosis, I’ve been on the following drugs to treat the Crohn’s (I’m not listing pain relief here. That’s a whole different post):

  • Budesonide EC/Entocort. This is a corticosteroid, much like prednisone, but with many fewer side effects because it is largely processed in the liver. It’s distributed through the lower small bowel, terminal ileum, and upper colon. These are the most common sites for Crohn’s to affect, and some of my inflammation sites are in that area (all in the ileum though, not the colon). I’ve been on the maximum dose (9mg/day) for over a year. Surgeon Sam thinks it’s not doing much, and he doesn’t want me on corticosteroids for no reason, so we’ve tapered that to 6mg in the last month. My pain seems to be worse though, so I will report back on that front.
  • Imuran/azathioprine. This is an immunosuppressant, also used to treat leukaemia. I took it for ten days and developed facial redness and scaly skin, which apparently means it’s a sign you have an allergy or intolerance and you can’t safely take it. Well, bugger.
  • 6-MP/mercaptopurine. This is the pre-metabolised version of Imuran. It’s associated with more side effects, but can sometimes be effective when Imuran doesn’t work or isn’t tolerated (the reverse is also true). I took this for about a month or so, and then it turned out I was producing nearly four times the level of toxic secondary metabolites that humans can tolerate. So I had to stop that one.
  • This is another immunosuppressant, but it operates along a different pathway to the other two. I had monster nausea the first time I took it, which is not uncommon, but as soon as I started smashing the supplementary folate, it went away. However, when I was away at sea for a month, I developed extensive and bizarre bruising. Now, I’m uncoordinated, and I was on a boat, and I’m also on corticosteroids (see (1) above) which can weaken capillaries a bit. EDS sufferers also bruise very easily due to our wacky collagen. Given these profoundly confounding factors, it’s not entirely certain that the methotrexate (or mtx to the in-crowd) was responsible for the bruising, but I was away at sea, so – via email – my surgeon advised me to stop taking it.

Right now, I’m taking a tapered dose of Budesonide and that’s it.

The Budesonide is not working. It barely takes the edge off. So, if I’ve tried Azathioprine, 6-MP and methotrexate, and none of those seem to be safe for me, what’s left?

Well, there are a few other treatments. Very powerful, scary, effective treatments.

It’s just that they’re also incredibly expensive. We are talking ludicrous numbers. Now, I live in a country with very good socialised, single-payer healthcare, and I’m used to benefitting from that. However, the budget isn’t endless, and Medicare (the Australian version) won’t cover these newer treatments unless you are very sick. Basically, my Crohn’s has to be much, much worse before I’m able to be treated with these medications.

It’s good that I’m not sick enough for Remicade. I don’t want to be that sick.

But I also don’t want to be untreated. Crohn’s Disease is a progressive condition. Even if you’re asymptomatic, it can progress and do a fair bit of damage to your digestive system (which is why “controlling it with diet” is a bit suss unless you’re also being regularly tested and checked out for inflammation). If I leave it long enough, I will get sicker. The inflammatory patches will spread. They will get more severe. The pain will get worse. I will develop other symptoms and side effects I currently don’t have to deal with (everything from internal fistulas and abscesses to painful skin rashes to gall bladder issues and even to bowel obstructions).

And then… then I’ll get treated.

At the moment, we’re trying to avoid that outcome. I’m scheduled for a ketamine infusion in ten days to treat my chronic pain (visceral hyperalgesia). I’ll be in hospital for a week. If that goes well (or even if it doesn’t), I’ll go and see Surgeon Sam afterwards, and we’re going to try putting me back on the methotrexate – only this time, we’ll be monitoring my liver tests weekly. This way, we should be able to work out whether the bruising was caused by the mtx or not. If not: sweet. I can stay on the mtx.

Hopefully, I can be on a medication long enough to find out if it’s actually doing anything, because there’s the possibility that mtx might be safe for me to take, but might also not effectively treat the Crohn’s.

One sad undertone to all this is that I really would like to have a kid at some point, and Budesonide is a teratogen and methotrexate is an abortifacient. So my only real hope of doing that is to get into remission and go off the meds. It’s possible. My Crohn’s is mild, and remission is definitely achievable.

Right now it’s a frustratingly distant possibility. I’m 36. I haven’t got forever.

Confessions of a Language Pedant

Above all else, I prize precision and clarity in communication. I delight in capturing an experience verbally in a way that makes sense to me. I am horrified by imprecise, confusing language. My head aches and my stomach rolls when I try to untangle twelve line sentences filled with an excessive abundance of dependent clauses (there’s a reason I only studied law for one semester. I’m convinced judges don’t know how to end sentences, so they just keep going and hope nobody notices).

I used to prize writing my texts and emails and social media updates with the same sort of language I use in my blog, in fiction writing, in scientific writing, in academic essays: expressive and precise. I can never quite manage concise, but I take precise to be a requirement. I would use full stops. I would capitalise appropriately. I would not use “weird, made-up words”. I would cast severe shade on people using “u” and “ur” as actual tools of communication.

I’m over it.

Over the last ten years or so, I’ve witnessed the same thing so many have: the rise of a multitude of technology-inspired dialects. First inspired by slow typing and awkward phone keypads (remember having to press a button three times to get the letter you wanted?), and then spreading like wildfire when smartphones appeared. Perhaps the typing got easier, but by that point we were used to the shorthand.

Pundits opined the decline of literacy, and while on the one hand I felt a bit confronted by this new vowel-reduced stream-of-consciousness, I also felt that this was – to put it bluntly – a bit of a pointless wail. Rapid communication in one form does not in any way preclude being able to write precisely in another. If I say “I’m gonna lose my shit” aloud, it doesn’t mean I’m unable to write “I’m actually getting quite angry,” should I need to communicate more formally.

It took a little longer for me to pick the other problem: there’s a huge amount of privilege in being able to correctly and precisely employ standardised written language. A good amount of it is class privilege (education-based); some of it is able-bodied privilege (it is very hard to take time to type accurately on small phones if you have, for example, crippling joint pain in your fingers; and it is hard to mentally structure sentences if you have chronic pain affecting your concentration; not to mention learning disorders).

Did I really believe that those people who didn’t have access to my advantage – not the least of which was my ability to absorb language and grammatical rules like a goddamn sponge from a ludicrously young age – had less of a right to be heard?

No. No, I did not. For a little more effort, I decided, I could translate some confusion in punctuation and capitalisation (although I have trouble when people use giant walls of text. I can’t parse that. My brain has its own quirks that require a bit of kindness, and one of those is a desperate need for whitespace. In the absence of whitespace – that is, appropriate use of paragraph breaks – I get completely lost).

There are certainly limitations. Punctuation and capitalisation exist for a reason – the sentence structures of English can be extremely convoluted, and common examples (such as “Eat, my children!” vs “eat my children” and “helping my Uncle Jack off a horse” vs. the alternative sentence without capitalisation) readily highlight the problem. We’ve standardised the written language for a reason, and the reason isn’t to be a complete snob about grammar: it’s to aid in communication and understanding. And yes, I get very twitchy about inappropriate apostrophe usage (or lack of apostrophe when needed), but I have learned to just quietly correct them when reviewing papers and move on.

It is all very context dependent. Certain modes of expression are hilarious on Twitter but useless in a formal email. If my friend texts me “so fkn drnk” I know exactly what she means – and even, to an extent, can read a mood through the sort of text dialect she’s using – so I don’t care. At the same time, I’ve read text messages from employers that make zero sense due to their inability to figure out how to insert a comma, and emails from other employers that sound like they’re shouting at me because they are so internet-clueless that they don’t realise USING ALL-CAPS IS ACTUALLY VERY RUDE.

There is still a value to standardised, precise language. At the same time, and to use a bit of a hackneyed phrase, language is a living thing. It evolves, and it does so rapidly. Whether social media has accelerated the pace of that evolution or whether it’s simply accelerating the geographical spread of those changes is a question that I’m not in a position to answer. I’m not saying anything new here: numerous people have come to the same conclusion.

One very important example – at least as I see it – is the use of the singular “they” pronoun. Far from people whinging and wailing about the grammatical awkwardness of it, it seems to be that it is less of an imposition on standardised language than the rate at which we currently generate new words, the rate at which we “verb nouns”, to the point where people honestly have entire conversations in meme-speak and emojis (I do love a good emoji sentence. It appeals to me on a very basic level. I find it inherently hilarious, because it subverts expectation).

Add in other people’s preferred pronouns – be it xe, ze, etc. – and I’m now just starting to think of them as little sub-names, not too much different from a prefix or a suffix. It’s not so different from the fact that I’m technically called Doctor in some contexts, and Ms in other contexts, and I have the luxury of a nice, easy, binary pronoun: she/her (good morning cis privilege, we haven’t spoken today!). It’s a little identifier. We can change our names. Why shouldn’t we have some say in our other identifiers?

What I’m trying to say is that the labels we give ourselves, the labels we give each other, the labels we give things out in the world, and the way we structure our communications – these things are always in flux. They have always been in flux. Somehow, the human animal manages to keep up very well. Throw us a curve ball in language, and we might blink and scramble a bit, but generally speaking, we’ll catch it. Everything from management-speak to strange shorthand (“totes”) to combined words (I’ll bring up “chillax” as an example, even though that’s one that I actually can’t get behind. Some people hate the word “moist”; I hate the word “chillax”).

Picking one thing to get upset about – over all the other shifts and changes we just take in our stride daily – seems like it has deeper meaning. Sure, there are certain kinds of dialects we associate with certain traits – I’ll never be able to convince some people that use of the phrase “going forward” or employing “action” as a verb doesn’t inherently mean that person is a wanker (I actually find them useful shorthand, and I don’t manage anybody).

But we need to move beyond this idea that incorrect grammar or punctuation means someone is somehow deficient in understanding, or that they don’t deserve to be heard; we need to move beyond this idea that the language we have now, or that we had yesterday, or – to be more specific about how humans actually work – the language we had when we were learning language ourselves is somehow the ideal Plato’s fucking cave language and that all subsequent changes to language are a corruption of the glorious ideal.

We need to remember what language is for. It’s for communication and expression. It can be beautiful and wild and precise and reasonable; most importantly, it is for making yourself understood and for understanding others.

Speak. Write. Be heard. Use the dialect that makes sense to you. Make yourself understood. Have patience. Embrace the change – because you’re not going to be able to stop it.


Gotta Die Of Something or “Quality of Life vs other Quality of Life”

(note: apologies for the long gap between posts. I’ve been overwhelmed lately, but I have so many ideas and also personal updates, so I’ll catch up, I’m sure!)

I was born at the very start of the 80s, the height of the low-fat and jogging obsessions. The adults in my life were profoundly scathing of “wankers” who cared about health, seized on any vaguely fluffy research that declared red wine was good for you, and loudly proclaimed that one had to die of something (while, by the way, being very anti-smoking and anti-drugs, based on their own personal experiences).

This attitude has waned a little (along with the low-fat obsession, and thank fucking god for that one) and it’s a little less prevalent, but now it emerges in a different way. It feels like there’s a constant tug of war between the gluten-free-meditate-yoga-wellness crowd and the oh-for-fuck’s-sake-you-tosser crowd. I admit, I don’t have a huge amount of patience with the former, because a lot of what is promoted isn’t actually supported by science, and I don’t want to waste my time and money.

(Note: yoga, when performed correctly, seems to be very good for muscle development, balance, mood, flexibility and strength. It does not – as some of my yoga instructors have claimed – balance my pituitary gland. In the same way, a good chiropractor can help ease back pain. They cannot cure or prevent viral disease.)

But I’m not entirely sure I have a lot of patience for the second crowd either. I’m not talking about people who have just decided what matters to them and what doesn’t. That’s what everyone has to do. No, I’m talking about people who feel judged the minute you excitedly share that you got a personal best at the gym (and I don’t even mean when you talk to them directly), or that you’re excited about a new low-carb recipe.

This is the “You gotta die of something” and the “Who wants to live forever anyway” and the “you won’t live forever, it’ll just feel like it” crowd.

I’ll take “Appalling Logical Fallacies and Over-Simplifications” for $500, Alex.

The amount of time and money I spend on my health is legitimately ridiculous. I’m exercising constantly. I run 2-3 times a week. I lift weights at least once a week (preferably more, but I’m having some scheduling issues at the moment). I go to clinical pilates once a week. I have a sports podiatrist that I see regularly. I scuba dive (although I could argue that’s a net negative for my health; another story). I go indoor rock climbing. I try to sleep a sensible amount (I’m so bad at this one right now). Most of the time, I eat a very strict low carbohydrate diet, in order to reduce the nausea and pain from Crohn’s. That means no sugar, no wheat, no rice, and almost no fruit. Sugar-free everything. I also take supplements, because it turns out that when your gut isn’t good at absorbing nutrients (thank you, Crohn’s Disease), and you’re required to cut a bunch of stuff out of your diet for various reasons, you miss a few things. Also, when you’re hypermobile, taking fish oil for your joints goes from “might as well” to “actually, you really notice when you stop.”

I’m that person who will occasionally order the almond milk decaf cappuccino and then add in two packets of artificial sweetener, because I’ve finally admitted that I actually don’t like almond milk decaf cappuccinos very much, I just want the psychological crutch of a “coffee” in the evening without staying awake all night and getting the gut discomfort of lactose consumption.

I turn down alcohol because my reaction to it isn’t worth it, 95% of the time. I don’t want to lose my entire next day to fatigue and sore joints.

I am, in the parlance of the adults around me when I was a little kid, a total wanker.

I’ve given up things I really love eating (not forever; I break keto for extended periods due to travel, and then I get to have pizza and almond croissants and yum cha and also feel very sick).

This was all my choice, but I sometimes feel taken aback when I end up talking to one of the “gotta die of something” crowd, because I always want to reply, “That’s true. How soon would you like that to happen? How much would you like it to hurt when it does? Do you want to be able to move in the meantime?”

I don’t reply that way. It’s more trouble than it’s worth, and it’s important to leave people to their own priorities and decisions. But I want to.

The fact is that I’ve given up some things, and forced myself to do other things (all that working out is time I could spend doing other things) and in that sense I’ve missed out on some fun. I’ve reduced my quality of life from that measure.

But in another sense, my quality of life is profoundly better because of this.

I can walk straight, now. Pilates has repaired my posture to the point where it doesn’t hurt to sit at a desk or go for long walks.

I can lift heavy things without whimpering. Basic everyday tasks are easier. Chores are less overwhelming. My energy levels are still profoundly shithouse, but I do have two chronic illnesses, so that’s not surprising. They are, however, better when I’m eating right and working out than the rest of the time.

I don’t feel sick all the time. I am in pain, but again: my Crohn’s Disease is not being effectively treated (that’s another whole story) and that’s an expected outcome.

I get less abscesses and less of certain other very unpleasant recurrent conditions because of the shift in my eating. I am less bloated.

I get less sugar cycling, less fatigue, less afternoon crashes.

I get less mood swings and less anxiety.

And I’ll take missing out on booze, on almond croissants, on office birthday cake, on indulgent take-away dinners. I’ll take that, because now I can move. In a way, I hate that it all works so well. I hate that exercise really does help with the pain and fatigue of EDS, and I hate that the diet mitigates my CD symptoms. It’s great that it works – because oh my, something that works? Gives me power over my life and my illness and my body – but I kind of wish it was a beat-up, and that I could stop doing it, because it all takes a great deal of mental and physical effort (and cash. Much cash).

The price is high.

The pay-off is so good.

I’ve decided that feeling awake and mobile matters to me more than those things I gave up. Most people I know have picked out their priorities, and decided that some things give them enough joy that the health costs are worth it – and I’ve made that decision for a few of my activities – while other things aren’t worth it, so they’ll take the hit there. This seems very sensible to me, because there are so many different kinds of quality of life. There are things that give you joy, and things that make you healthy and reduce long term pain, and most of the time in life you don’t have to decide between them; but sometimes you do.

And it would be nice if we could stop calling people wankers for making that call.

On the personal side? I struggle with smokers. My step mother died of terminal lung cancer, with six months from diagnosis to death. It’s hard to watch the people I love smoke. But when it comes down to it, that’s their call. They know. I respect the people I love. I respect their adulthood, their intelligence, their own priorities. They’ve made the call.

The hardest thing I find to deal with is where ignorance is involved (obviously, smoking is not a culprit here; everyone knows it is profoundly linked to lung cancer). People who don’t do what their physiotherapist tells them because they “get enough exercise” (and then wonder why they’re not getting better). People who don’t vaccinate because they think it causes autism (yes, being like me is much worse than dying of measles-induced encephalitis). People who don’t know that they should get the pain in that joint or muscle investigated, because it could be an easy fix and then they won’t have to deal with it any more. People who are bloated and complain of constant gut pain but won’t get checked for an allergy or an intolerance because they might have to give something up. That’s not an informed choice.

So yes: I struggle with this too. I want everyone to have all the information they need to make the choices that will make them happiest, whether that means giving something up or doing something extra to stay healthy, or whether it means deciding they can tolerate a risk or a discomfort because something makes them really happy. And it’s hard to get that information sometimes. Not everyone has a background in science. Not everyone has a fantastic medical team that they can trust to listen to them and tell them what they need to know.

And that infuriates me most of all.