Hang on a minute

The healthcare profession is a noble one, and we entrust our very lives to doctors, nurses, medical and lab technicians, pharmacists, researchers—and more I’ve forgotten at the moment. However, doctors aren’t perfect, and one particular flaw has reared its head again in my Health Journey, though I’m probably most annoyed that I didn’t see it immediately.

I’ve had a gout attack for more than a month now, one that began, I thought at the time, over stress about “something that happened [that] week that upset me, because stress is my major trigger of gout attacks.” Three weeks later, the attack was waning when I injured the same ankle, and the attack flared up again. Or, so I decided.

It was nearly over when I went on my big day out a week later, and then the next day I ate turkey for lunch, and my attack roared back with a vengeance, and it’s still going on. Naturally, perhaps, I assumed the turkey caused the flare up, even though that’s never happened before.

I now think I was wrong, at least partly, about all of that.

Nigel reminded me this morning that we hadn’t considered my drug changes. Last September, when I was in hospital for evaluation of atrial fibrillation, they put me on what they called “a powerful anti-coagulant” called dabigatran.

What Nigel reminded me of was that when I had the stent put in, they put me on a drug called Clopidogrel, and I had several weeks of unrelenting gout attacks, some severe and even crippling. I learned, thanks to my own research, that “there are studies that indicate that it can cause gout in 1 to 2.5% of patients.”

Yet whenever I’ve mentioned this to doctors since, they have all told me firmly “that’s impossible”, or “it can’t do that”, or any number of similar things. This has annoyed me to no end. As I said a couple years ago:

Too many medical professionals are locked within their blinkered world in which nothing exists that isn’t backed by overwhelming research. So, 1 to 2.5% of people getting gout from a drug would, to them, be totally insignificant—to the point of not existing at all. That’s easy for them to smugly believe: They’re not the ones having to deal with chronic pain, often severe, often crippling.

The stand-off here is that I know what I went through, doctors have consistently denied it was even possible, and I get pissed off at them. Despite that, I always listen and take what they say to heart. Which is why it never occurred to me that my current anti-coagulant, dabigatran, might also cause gout.

Surprise! There’s evidence it does. Medsafe (New Zealand Medicines and Medical Devices Safety Authority) is a part of New Zealand’s Ministry of Health. Among other things, it’s tasked with tracking “adverse reactions” to prescription drugs, and they’ve noticed reports of gout attacks among people on the drug. They said on their site:

Gout is not a known side effect of dabigatran and is not included as a side effect in the data sheet. A search of the WHO’s pharmacovigilance database VigiBase to date, revealed 71 reports worldwide of gout or gout-like symptoms, suspected to be associated with dabigatran use. This is a higher number than expected, making this association a safety signal. As always these are reports of a suspected link between dabigatran and gout and it is likely that other factors are also involved. This is why we are seeking more information. [link and emphasis added]

I realise that 71 cases worldwide may not seem like many (unless you’re one of the 71, of course), but it was enough to convince Medsafe to do some monitoring. Between January and July of this year, Medsafe had 8 cases reported to the Centre for Adverse Reactions Monitoring (CARM):

Two of the patients were female and six were male, and the mean age was 70 years. Of the seven patients with gout, two had a history of gout while the other patients either did not have a gout history or the history was uncertain. The onset of gout or gout like symptoms was within 10 weeks after starting treatment with dabigatran for five patients while it was up to over a year for the other patients.

They also note that:

Cases have also been identified in other countries. Six new reports were added to VigiBase during the monitoring period of which three are from New Zealand.

So New Zealand reported around 10% of the total worldwide cases, which seems improbable. This suggests that there could be a more than casual link (and a lot of underreporting—do doctors not report cases because they think it's impossible?). The problem is in the details:

Review of this safety concern highlighted that other conditions experienced by the patients may increase the risk for developing gout, common risk factors such as atrial fibrillation and difference in methods used to diagnose gout. As gout is a disease that is characterised by flares, it is difficult to pin point the cause of development of the disease as well as reasons for improvement.

I was prescribed dabigatran because of AF, as many others have been, and there seems to be a link between AF and gout, which muddies the waters a bit. But whether the drug causes or aggravates gout all by itself is kind of beside the point: There is some sort of connection we don’t fully understand, and patients deserve to know be told about it. Medsafe don’t want to because the link hasn’t been conclusively proven, and the specific mechanism for how this might happen isn’t understood so it can’t be properly investigated. I get all that, but not telling patients what IS known is not acceptable.

At this moment, neither New Zealand nor the manufacturer list gout attacks as a possible side effect.

It is possible, maybe even probable, that if I mention this to my doctor she’ll tell me that dabigatran can’t cause gout attacks. The problem being that to most doctors, lack of clear proof equals lack of ANY evidence.

So, I don’t know where this will go from here. Maybe they’ll raise my dosage of allopurinol; the Medsafe review mentioned that controlling uric acid levels in the blood is important. Well, duh! I’ll try to insist that the doctor reports my experience with the drug to CARM, but I can’t force her to, obviously.

What I know is this. My gout was reasonably stable since they raised my dosage of allopurinol, with only one severe attack I can remember. This current attack began around 6½ weeks after I began taking dabigatran, and it’s lasted 4½ weeks (so far), with some days worse and some better, but it never actually ends. The length of this attack is also unusual.

What I don’t know is whether the dabigatran is the specific cause of this attack, or just an enabler of sorts, helping other triggers—like the stress I thought started this, the injury, or the turkey—to do their worst. Nevertheless, I clearly need to take action, and that’s where this particular journey will be headed.

It would be nice if doctors helped in this process, but maybe they just can’t. That’s okay, I can do it for them. And, I will.

Important note: This post is about my own personal health journey. My experiences are my own, and shouldn’t be taken as indicative for anyone else. Similarly, other people may have completely different reactions to the same medications I take—better or worse. I share my experiences because others may have the same or similar experiences, and I want them to know that they’re not alone. But, as always, discuss your situation and how you’re feeling openly, honestly, and clearly with your own doctor, and always feel free to seek a second opinion from another doctor.

Eight Weeks Later

Eight weeks ago this past week I had my hospital adventure. I am, all things considered, doing well, but it’s those things to be considered that prevent me from talking about this experience as one of progress. Because, so far, it really isn’t.

The past eight weeks haven’t exactly been a picnic, as I wrote about three weeks ago, because of the gout that’s plagued me since the day I left the hospital. However, I think I now know why that’s been the case. The next step is to fix it.

After my post three weeks ago, the gout attack I mentioned got worse for the weekend, then eased the following Monday. I was able to get out and about again, and went to buy cherry capsules to begin them again, the first time since before this all began. I was walking basically okay at the time—a little limpy, but okay.

The following week, the symptoms all but disappeared. However, given my experience of the gout attack waning, only to come roaring back every bit as bad—or worse—than before, I joked that it was “in remission”. That turned out to be apt.

A week ago today, I woke up with a sore elbow. I didn't think anything of it—I thought maybe I’d just slept on it wrong. But the next day, this past Sunday, it was evident: For the first time ever, I was having a gout attack in my elbow. That attack is still going on.

There’s only one drug, allopurinol, approved for my GP to prescribe to prevent gout attacks, but, as I must have explained before, I have to be symptom-free for two weeks before I can start it. Otherwise, I’m told, it causes a terrible gout attack—which does make me wonder: After 7 out of 8 weeks with often severe gout attacks, how much worse could it possibly get?!

Anyone who knows anything about gout will probably be aware that attacks don’t naturally last this long. Even the most severe attacks I’ve ever had have ended within about a week, with no immediate, new attack following. Yet my attacks over the past two months have nearly all been immediately followed by another one.

It turns out, there’s a reason for all this.

One of the drugs they put me on, Clopidogrel, is used to prevent clotting around my coronary stent, and I’m due to take it for another four months. However there are studies that indicate that it can cause gout in 1 to 2.5% of patients. That would appear to include me.

The medical staff at the hospital never warned me about that side effect, but, then, they didn’t tell me about the side effects of any of the drugs: I read about them in the medication information sheets from the Ministry of Health that are given to a patient whenever they start a new prescription (and they didn't mention gout, either). They were all aware that I have gout.

The thing that annoys me about this, though, isn’t that they didn’t warn me, since they typically don’t do that, it’s that it would never occur to them to warn me.

Too many medical professionals are locked within their blinkered world in which nothing exists that isn’t backed by overwhelming research. So, 1 to 2.5% of people getting gout from a drug would, to them, be totally insignificant—to the point of not existing at all. That’s easy for them to smugly believe: They’re not the ones having to deal with chronic pain, often severe, often crippling.

So, one of the drugs being used to keep me well longer-term is at the heart, so to speak, of the thing that’s keeping me from being able to fully recover. Bad as that is, the bigger problem is that there’s nothing I can take to treat the attack, and there’s no pain reliever I can take other than paracetamol. As I explained a week into this:

NSAIDS [non-steroidal anti-inflammatory drugs] like ibuprofen, which was part of my usual treatment for a gout attack, conflicts with my statin. Worse, anything else could cause bleeding, since I’m on blood thinners for six months or so. That means that paracetamol (also known as acetaminophen) is all I can take.

Because I can’t take NSAIDS, I have nothing to minimise or end the inflammation that’s part of a gout attack, and often the thing more than the pain that can be crippling. But the often severe pain is what makes this truly miserable, and it’s a pain that I effectively have no way to ease or relieve.

The other night, as I lay sleepless and in severe pain, I thought of an analogy to explain this state of affairs. Imagine someone handed you a water pistol, totally full, and said you’d have to use it to put out a fire. They open a door, and there you find a couple bits of crumbled paper burning in an ash tray. You aim and shoot the squirt gun at the fire, and you put it out. This is paracetamol treating a common headache.

Then, after refilling your squirt gun, you are taken to another door. They open it, and on the other side is a roaring bonfire. Even a squirt gun many times the size couldn’t possibly put out that fire, but all you have is the ordinary sized one you were given. The door behind you is closed and locked, and the only way forward is through that fire, but all you have is an ineffective squirt gun. You empty the squirt gun, but the fire roars on. This is what it’s like to use paracetamol on a severe gout attack: It doesn’t help at all, but it’s the only thing I can use.

I also came up with other analogies to help explain the pain: A mild attack is usually just some soreness, maybe a kind of dull ache, like maybe you’ve been standing on your feet way too long. But a severe attack is rather different: Imagine a razor-sharp dagger-type knife that’s been heated in a fire until it nearly starts to glow, then someone places the tip of that sharp, red-hot knife against the skin above a joint. Then, they push it in a millimetre or two, and stop. The searing pain eases, and then they push it in farther, and so on until that red-hot sharp blade is fully in your joint. Then, they move it every minute or two. That’s a severe gout attack, and sometimes even the slightest movement of the joint can be like you’ve pushed that knife into the joint yourself. Other times, the searing pain just shoots through the joint unexpectedly, as if an invisible force were pushing an invisible hot sharp blade.

I talked to my GP about this situation the last time I saw her, but she demurred, probably because one of the few solutions is steroids, which can have deadly (literally) side effects, and need to be closely monitored by a cardiologist. I’ve since found out—because I have to research answers to my own medical questions—that there are other blood thinners available for this purpose, ones that don’t have the same side effects, so maybe that’s an option. I don’t know, however, if they’re good enough for me or even available in New Zealand.

I was due to see the cardiologist for a follow-up sometime between four and six weeks, but they haven’t rung me yet. And, until last weekend, I really thought—hoped?—the gout was over.

So, on Monday I’ll ring and press them for an immediate appointment, or, failing that, a referral to a cardiologist so I can get this sorted. I have no alternative.

Well, I have several alternatives, actually: Four more months of chronic gout attacks, with often severe and crippling pain. Or, I could just stop the blood thinner and risk clots forming that could kill me. Or, I could take NSAIDS and risk a severe drug interaction. Or, they can work to fix this. I will be insisting on the latter, and I won’t be taking no for an answer, no matter what.

Despite those things to be considered, meaning, apart from the gout, I really am doing well. I’ve now lost 5.4kg (11.9 US pounds) since this adventure began, all from better eating—since it was only last week that I was even capable of walking (had I not been too busy with work; this past week my mother-in-law was here, so I was busy, and with my painful elbow, walking was the last thing on my mind). I generally feel good, apart from the usual general yuckiness that accompanies gout attacks (and paracetamol actually does help with that).

My greatest fear at the moment is that I’ll get another attack in my foot or ankle or knee sometime in the next couple weeks, because until my elbow fully recovers, I can’t put any weight on it, and that means I couldn’t use my crutches to get around. And all THAT would mean I’d be fully bedridden for days, up to a couple weeks.

Maybe I’ll have a bit of luck, and my worst fear won’t come true, or it’ll be in the opposite foot. After all, I did have about a week with no real gout symptoms (and that’s the irony of this: Another week and I could have started the allopurinol).

Mere recovery is now well and truly over, and I’m on to the business of becoming better—fitter, in other words. If I can get this gout under control, I can get on with moving forward—moving being the key word there.

Still, eight weeks later, I am doing well. All things considered.

Information contraindication

Information is a great thing, but sometimes it can be a terrible thing. Sometimes, there’s too much information, and when it conflicts, people will often choose bad information, particularly on matters of health and nutrition. Personally, I often see that with information about gout.

The thing about gout is that it’s very confusing—not the disease itself, but the advice about it. What’s okay to eat? What should one avoid? How does one treat an attack? It turns out, there are all sorts of varieties and flavours of answers.

When I was looking for the video at the top of this post, I also saw some videos talking about how to deal with gout. Some were from what one might kindly call crackpots, people with clearly strong opinions and few facts to back them up. I also saw some videos with actual doctors in them, but these often contradicted each other, as medical sources often do, too.

It was at this point that I had an epiphany: I’ve often wondered why otherwise sensible people will listen to crackpots and cranks for health and nutrition advice, and not to doctors. I realised that the crackpots present their information with definite assurance and certainty. Doctors, on the other hand, base their advice entirely on what science has proven to be true. So, doctors will offer suggestions for things that studies have proven to be useful, but will not offer suggestions for things that aren't proven—even if those things may actually be helpful. Moreover, they’ll often offer the advice with equivocation.

For example, I saw a video made about three years ago in which a doctor said at the end of the video words to the effect of, ”Some people say cherry juice is helpful. While there’s no scientific evidence yet, if you find it helpful, use it.” Since that video was posted, there have been studies that have proven that cherry juice (from cherry varieties known as “tart cherry” or “sour cherry”, though they’re neither) is effective in helping to prevent gout attacks and lessen their severity, particularly when used with conventional anti-gout prescription drugs. At the time the video was made, there was already evidence to suggest that this might be the case, however, because there were not yet any clinical studies, the doctor in the video wouldn’t suggest cherry juice as part of a preventative dietary routine.

Crackpots, however, have no such restraints: They don’t need proof that a remedy is safe and effective, they only need anecdotes. So, an ordinary person coming across the video of a crackpot offering health advice will notice the certainty and unequivocal assurance that everything they say is true. But someone going to a real doctor’s video will notice the equivocation and qualification of the advice offered. When an ordinary person is looking for certainty and for reassurance, information that is not equivocal will usually be more appealing.

It doesn’t help when doctors give conflicting information, either. For example, a booklet from Arthritis New Zealand tells people with gout to minimise the amount of meat, chicken, and seafood they eat because the foods contain protein. They suggest, “Try beans, peas, lentils, and tofu instead of meat. Beans, peas, lentils, and tofu contain less protein than meat and seafood.” However, other medical sources say to avoid beans, legumes and pulses, and that doctor in the video I mentioned earlier specifically said to avoid tofu.

Is it any wonder that people with gout can be so confused about what to do?

Without any real help from the medical establishment, people will often go looking for “alternative” answers, which can cause problems or make their condition worse. It also doesn’t help when actual medical advice is given with a declaratory nature, as in, “avoid this thing”, when gout is highly individual and some things just won’t bother some people.

There was a theory, since mostly disproven, that Vitamin C was helpful. Despite new studies suggesting it has no affect whatsoever, some sites are still suggesting it. Some evidence suggests that low-fat dairy may be beneficial, that it may have a protective affect, while some medical sites still say to avoid or highly restrict dairy.

And those beans and so on that people with gout should avoid? There’s evidence that vegetable sources of protein may be treated differently by the body than protein from animal sources—apart from lentils and black-eyed peas, which are extremely high in purines, the protein component we’re actually trying to avoid.

This could provide the solution to the vegetarian paradox: Gout is so rare as to be virtually unknown among vegetarians. Logically, a vegetarian diet—ideally the lacto-ovo variety—should be the healthiest option for people with gout, though more research is needed. Even so, the fact that some medical sources say avoid all beans confuses the hell out of people.

The video at the top of this post is a TV ad that began running earlier this year, and the thing that started this little journey. It has its own misleading information. It portrays gout as something that springs out of nowhere to strike suddenly, like a steel trap, to catch someone when they’re just out and about. It just doesn’t work that way. Sure, gout can and does strike suddenly, but that’s often at night, when one is in bed. But there are usually warning signs an attack is coming: Unusual soreness in a joint, maybe even general feeling of illness (for example, I usually feel like I’m coming down with the flu before a big attack).

The ad is misleading about the way gout attacks typically happen— in my opinion, unnecessarily. The rest of the ad is spot on—gout is a manageable disease, often through diet, exercise, and healthy weight maintenance alone.

But if even the people who are THE body dealing with gout couldn’t make an ad that was clear and completely accurate, then what hope do we ordinary people have of finding good and useful information?

Real doctors should be less equivocal with their advice, saying what is currently believed, even when adding that more research is needed. We NEED reliable medical information that helps us know what to do. If the professionals in medicine and science won’t provide it, crackpots will, and that benefits no one.

Options, choice, and woo

It’s human nature to want to fix things that are wrong with us—disease, conditions, even just things we don’t like about ourselves. Science and medicine give us many tools to help with disease and health conditions, but sometimes we want something more or different. Most of the time, that’s okay, but sometimes it’s quackery. I found that out in my own fight against gout.

Rationalist sceptics of all sorts (especially in the areas of religion and science) have a name they use for nonsense: Woo is a word used to describe any belief for which there’s no supporting evidence, or insufficient evidence, and that’s unscientific or even anti-scientific. It was derived from woo-woo, which I’ve often heard was coined because of the mocking spooky sound of the word. It definitely IS insulting, intentionally so, I think, and I don’t have a problem with that: Sometimes it takes a little push to get people to confront their irrational beliefs.

Over the years, I’ve searched for solutions to gout, things that could help prevent attacks as much as possible. This was because of my stubbornness in avoiding all prescription drugs, something I managed to do until this year, though it wasn’t a good idea, obviously.

Still, part of the problem I faced was that doctors wouldn’t give definitive recommendations, a problem I wrote about last year. I wrote:

Without any real help from the medical establishment, people will often go looking for “alternative” answers, which can cause problems or make their condition worse. It also doesn’t help when actual medical advice is given with a declaratory nature, as in, “avoid this thing”, when gout is highly individual and some things just won’t bother some people.

Not long ago, I heard a sceptic of anti-science say that there’s no such thing as “alternative medicine”—there’s either medicine, or there’s quackery. Her point was that medicine is evidence-based and results can be proven, predicted, and reliable. So, the implication is that anything that isn’t those things isn’t medicine, it’s woo.

But, is it really?! Well…

The problem is that lack of proof is not the same thing as lack of evidence, and something that isn’t proven isn’t necessarily ineffective. As long as something isn’t actually harmful, there’s little reason not to try something unproven, and if there’s any evidence it might be beneficial, there may be good reason to try it.

Tart cherries are a good example of this. There’s evidence that tart cherries help fight gout, especially when combined with allopurinol. It’s thought that substances in tart cherries, particularly the Montmorency variety, helps break down uric acid in the blood. That substance is also what gives cherries their dark reddish colour, and it’s higher in tart cherries than in other cherry varieties or in berries.

Researchers at Otago University are studying the efficacy of tart cherry in reducing the frequency and severity of attacks, partly because so many people would rather not go on the drugs. Tart cherry seemed to help me, however, my circumstances changed and I needed stronger weapons.

Not all cherry capsules are the same. For the past few years, I’ve been taking Redd Remedies’ Gouch, which I only recently learned contains ordinary cherry. It also contains ginger (about which, more in a bit), among other things. Before that, I took Radiance’s GoutEze, which contains tart cherry, but much less of it than Gouch has of ordinary cherry, and it has a lot more ginger, plus baking soda, which made me burp too much, leading to me changing brands. Both cost roughly a couple dollars a day.

The problem is the ginger—and the baking soda, and all the other stuff added. Most of it has no evidence of efficacy, but the use of ginger and baking soda are both nothing but woo.

Fans of including it claim that ginger “warms the blood”, and that keeping joints warm is critical to avoiding gout attacks (I saw a recommendation that gout sufferers should wear socks to bed). The fact, however, is that ginger does not “warm the blood”. It absolutely has warming properties—in the mouth and stomach alone. Once consumed, ginger is eventually neutralised in digestion and it doesn’t—and can’t—“warm the blood”. I knew this, but ignored it because, at the time, I couldn’t find tart cherry pills without ginger.

The use of baking soda and similar compounds, fans say, “alkalinises the blood” making it less hospitable to uric acid and the crystals they form. This is utter nonsense, and can even be dangerous.

The human body is designed to operate within a very narrow pH range: If the body becomes too acidic or to alkaline, we die. Because of that, humans have all sorts of natural mechanisms to control the pH balance (for example, respiration). The foods we consume DO increase the acidity or alkalinity of the digestive system—for a while. There, too, the human body naturally intervenes to keep the pH balance in the normal range, and if our bodies can’t do that, we need medical help, but unless that’s the case, nothing we consume can change the acidity level of the blood—nothing.

This particular woo can become dangerous: I saw advice that gout sufferers should consume baking soda directly to “alkalinise the blood”. Trouble is, consuming too much can be fatal in some circumstances, and it’s adding extra sodium, one of the leading causes of hypertension, to the body.

So, sceptic that I am, I want to see some evidence that something may be effective, as is the case with tart cherries. But even I have been desperate enough to try full on woo: Apple cider vinegar.

I tried it many years ago, and suffered a gout attack shortly after I started. However, in my recent misery, I was desperate enough to give it another go, and I read up on it.

All the advice was that it must be organic apple cider vinegar (ACV). This was my first red flag: There is no chemical difference between organic and non-organic ACV, since they're both acetic acid solutions. Also, organic ACV can actually have higher levels of pesticides because organic-approved ones have to be used more often and at higher levels than non-approved ones.

Fans of ACV said that it works because the acetic acid is “alkalinised” in digestion, and then lowers the acid levels of the blood. There’s an element of truth in this, in that the body does alkalinise acids in digestion, but, as I’ve already said, that doesn’t and can’t “alkalinise the blood”.

So, I wondered if the effective part might actually be the “mother”, the cloudy, stringy-ish stuff in organic ACV that’s the bacteria that produces the acetic acid. We know that certain bacteria can be very beneficial (for example, the bacteria in yoghurt can help restore bowel health after a course of antibiotics), so I thought that possibility was enough to give it a go.

I had zero benefit from ACV. Despite claims that a gout attack would end in hours or, at most, a few days, ACV had absolutely no effect on my attack, and I ended the experiment after a couple weeks. What DID work was increasing my dosage of tart cherry and drinking tart cherry juice, too: Once I started that (well after the ACV experiment), my symptoms finally eased, and I finally went into remission.

So, how could all those people who claim such miraculous results be so wrong? There are a lot of reasons, starting with the “it worked for me” fallacy. Trying a substance on ourselves without controls or strict observable regimen means we can’t possibly know if it worked or not. Instead, it could just be confirmation bias—essentially, we got the results we expected. This is a form of self-deception, sure, but for most people it’s most likely to be a placebo effect, a real phenomenon in which people believe that a substance has helped them when it hasn’t.

For people like me, who want evidence—not proof, necessarily, but verifiable evidence—that something is safe and effective, we are perhaps a bit less likely to believe that something “worked” when it didn’t. Fans of woo dismiss our experience with a special pleading fallacy, arguing that something wasn’t done right—we didn’t take enough ACV, we didn’t take it correctly, we didn’t use it long enough, etc. But without controlled studies, there’s no verifiable evidence, and that fact beats their confirmation bias, whether they want to admit it or not.

The bottom line for me is that extraordinary claims require evidence—it doesn’t have to be proof, just verifiable evidence. People can talk about their own self-described wonderful experience, but that’s not evidence.

Which brings me back to tart cherry. There is evidence that it's effective, though we don’t yet know how effective or whether prescription drugs are needed, too. I’m well aware that my own seemingly positive experience using tart cherry is not evidence, and I don’t claim that it is. People must always do their own research, talk to their doctor, and listen to their own bodies.

In my opinion, we must all trust our intellect and judgement, and follow the facts and evidence, not blindly follow the latest woo. If we do, we’ll save time, trouble, and probably some money, too.

Still, people have the right to make their own choices, even ones some of us may consider irrational. However, they don’t have the right to preach their choices unchallenged. No one does.

And that is definitely a fact.

Another new adventure

Adventure is a good term, because adventure is a good thing. The word implies a something new, and hopefully exciting, that we’re about to begin. Sometimes, though, it can be used ironically for something that was not positive. Today I began something I hope will be the good kind of adventure.

This afternoon, I posted the photo above on my personal Facebook, and said: “I hold in my hand my brand new prescription for allopurinol, which hopefully will finally end my gout nightmare.” I start taking it tomorrow morning.

As long-time readers are very well aware, I’ve had an ongoing issue with gout attacks for many years now—for several years before I started blogging. I did a quick check, and I’ve mentioned gout in more than two dozen blog posts (so far…), though not all those posts were solely about gout.

The point is, this has been an ongoing issue for me for a decade and a half, and enough is enough.

Things became dramatically worse with my healthcare adventure: Seven weeks of unrelenting, often severe attacks, followed by around another three weeks of intermittent attacks (including one severe one). Moreover, I can’t take any NSAIDS for an attack because it could inter-act—perhaps dangerously—with my prescription drugs. That meant there was nothing I could do about an attack apart from wait it out.

One thing I don’t feel I’ve made clear is that this situation will never change: I’ll be on the prescription drugs for the rest of my life, and that means I’d also have times I’d be completely incapacitated.

Moreover, repeated gout attacks damage joints, never a good thing, but especially bad as we get older. And that, added to the probability of severe attacks I can do nothing to help or relieve, means that aging would mean losing mobility.

And yet, there is a solution: Allopurinol.

This drug isn’t perfect, and it has some drawbacks, along with possible risks and side effects (like all prescription drugs). But it’s the best option available to me, particularly when paired with the tart cherry pills I’ve been taking for several years. I’ll soon publish a separate post about what I do to help prevent gout, what doesn’t work, and so on. For now, though, I’m about to deploy my last, best defensive weapon.

So, that’s the why I’m doing this, but there’s also the why now?

Two weeks ago yesterday, the symptoms from my most recent attack finally ended. My doctor told me months ago that I needed to be symptom free for two weeks, and that in itself was often a difficult thing to achieve. So, on Monday, with the two-week mark rapidly approaching, I made an appointment, and today was the first day available.

My regular doctor is away on annual leave, so I saw another doctor. He did some basic tests, and wrote a one-month prescription for the drug, and ordered blood tests for just before I come back for a refill. They’ll test the uric acid levels in my blood to see of the dosage is effective, and also kidney function (because the drug can damage the kidneys). If it’s working as expected, they’ll renew it, or they’ll increase the dosage if it’s not.

I got the prescription filled immediately, took the photo above, and went home. I’ll take my first pill in the morning, with the others (and food), and that should be that for now.

I’ve been increasingly anxious over the past couple weeks, because I felt there was a ticking time bomb waiting to explode into another gout attack. I was careful not to do anything that might injure a joint (because that can trigger an attack), I watched my diet, drank a lot of water, etc., but still I worried an attack might arrive and re-set the countdown clock. Then, when I read the medicine information sheet, I saw that it said merely that I couldn’t have an acute attack when I started the drug, not that I had to be symptom-free for two weeks. I think my doctor was just being cautious.

At any rate, I’m now beginning a new adventure. I hope will be the good kind.

One week later

One week ago yesterday, I left the hospital, so that means that today marks one full week since that adventure. On the whole, it’s been a good week, and even the bits that weren’t ended up being good, too.

I’ve felt good ever since the procedure, with no angina or any other problems. The side effects of my new medication have mostly gone away, so, I’d be good to go.

The complicating factor has been the gout attack that began, really, a week ago today. It wasn’t too bad at first, became very bad on Saturday, good again on Sunday, bad on Monday, good Tuesday—and, to mix things up a bit—stayed good until Thursday.

Friday I went to see my doctor primarily to see if there’s a stronger pain reliever I could take, and there isn’t. NSAIDS like ibuprofen, which was part of my usual treatment for a gout attack, conflicts with my statin. Worse, anything else could cause bleeding, since I’m on blood thinners for six months or so. That means that paracetamol (also known as acetaminophen) is all I can take.

The worst part of a gout attack for me isn’t just the pain, it’s that just before a big attack, and at the earliest stages, I feel like I’ve got the flu—feverish (even if I don’t have a fever), general achiness and feeling yucky (that’s a technical term). It’s very unpleasant.

Because of all that, the gout attack has forced me to rest, which is probably a good thing. Much as I’m keen to get on with things like exercise, if I didn’t have the gout attack, I may very well have tried to do too much. So, the gout attack, unpleasant as it has been, is actually a good thing because it slowed me down a bit to give my body a chance to recover from the previous week, and even to heal from the condition that’s been fixed.

The doctor wrote a repeat prescription for my new blood pressure medication, keeping the dosage where it is for a month. My reading was much lower than when I saw her the week before, though part of the reason for the higher reading back then may have been stress-related. At any rate, it’s on the right track.

Meanwhile, I’ve lost about 3kg (the better part of 7 pounds) since all this began, which is a good start. I’ve also found some Apps to help me track and monitor my exercise, but, obviously, I haven’t been able to start using them yet. When I do, I’ll talk about them in more detail, along with another App that is supposed to help people make healthier choices at the grocery store.

So, all in all, I’m making progress and I feel good. Naturally, even though the gout attack has been oddly helpful, I’ll still be glad when it’s over.

And that’s where I am one week later.

Settling a dietary question – maybe

I seem to have settled a dietary question: I really can't have mushrooms. That’s a pity, because I like them, but at least I can be pretty sure I’m doing the right thing in avoiding them.

I've avoided mushrooms for years because they're supposed to be a trigger for gout. For the same reason, I've avoided beans, pulses and legumes. But over the past year or so, I began to wonder how true those old admonitions are. In November last year, I posted “Information contraindication”, in which I talked about the huge confusion over what is and isn’t good for people with gout.

The reason this has remained unsettled for me is that, unfortunately, the only way to find out for sure is to try some of the “forbidden” food and see what happens. That means courting a gout attack, which isn’t an easy thing to contemplate.

This past Friday, we had pizza for our takeaway night, and one of them had mushrooms, which I deliberately ignored. As is my custom, I had the leftover pizza for breakfast yesterday morning. This morning I woke up with gout pain in my foot that wasn’t severe, but bad enough that I needed to take pain relief.

Last week I’d had a mild attack in a different joint in the same foot, an attack that was pretty much done by yesterday. As I mentioned in passing in a post in May of last year, having something gout-related going on seems to make it easier to get another gout attack in that area of the body. In May of last year, I’d had aches in a joint that might have made me more prone to an attack when I injured the joint. This time, I was getting over a mild attack when I ate the mushrooms, so maybe they wouldn’t have bothered me if I hadn’t already been dealing with a mild attack. Still, I can’t always know the extent to which I might be vulnerable, so it appears to make sense to avoid mushrooms at all times. However, all those equivocations are why I can only say I’m “pretty sure” I’m doing the right thing in avoiding mushrooms.

Which still leaves questions about beans and the like. I still think that a largely vegetarian diet might be beneficial for me, but I’m even more reluctant to find out now than I was before. Still, when I get past this mild attack, and am less likely to be scared of causing pain, I may try it and see what happens.

Right now, though, getting past this attack is my only goal. Making myself the subject of my own medical experimentation can definitely wait.

Photo above is a detail from a photo by Max Straeten provided and licensed by Morguefile.

The important choice

Now that the US Midterm Elections are over, it’s time to talk about the most important choice of all: Peanut butter. Yes, I’m joking, but finding a peanut butter that’s both good and good for me has been a battle, one I think I’ve finally won.

There are a number of reasons why I wanted to find a peanut butter at all, but the main reason is that I grew up with it and I’ve always loved it. So, finding one that would wouldn’t harm me—or, better still, help me—was important.

For years I avoided peanut butter because I’d been told—wrongly as it turned out—that people with gout should avoid peanuts and peanut products because they’re legumes and, we were told, people with gout should avoid beans, pulses, and legumes.

Turns out, all that advice was flat out wrong. The official advice now is that people with gout should get most of their protein from plant sources— beans, pulses, and legumes, plus also tree nuts. Conveniently, people with heart-related issues get much the same advice.

In addition to avoiding gout attacks, I also want to avoid heart disease (of course). So, I’m meant to basically avoid red meat, get most of my calories from plant sources, and minimise salt and saturated fats. Basically, that means the Mediterranean diet, as I’ve mentioned before.

Peanut butter fits into this very well.

For gout, it’s low in purines (which I need to avoid, and that’s high in animal meat). It’s also high in oils that have anti-inflammatory properties, and that may help prevent gout attacks.

For heart health, it’s high in mono- and polyunsaturated fats, rather than saturated fats. Peanuts have phytosterols which have been shown to lower LDL (“bad”) cholesterol. Peanut butter is a vegetable based protein which, when combined with grains, is a complete protein like that of animal products, but without all the bad stuff (cholesterol and saturated fat).

I’ve always known about the protein in a peanut butter sandwich: When I was a kid, my mother used to talk about how peanut butter sandwiches have as much complete protein as a steak (though at that time no one talked about the bad effects of eating meat). As an aside, my mother used to pronounce it “PRO-tee-en”, rather than the “pro-teen” that was common where I grew up. This confused me.

So, peanut butter can be good for me, BUT: I need to look at the sodium levels, because they vary dramatically among commercial brands. Here are the brands I tried:

Bega Smooth Peanut Butter (per 100g): 2590kj, 23.8g protein, 8.5g sugar, 576mg sodium. This was the starting point. Originally made in Australia by Kraft, it was bought by Bega when Kraft decided to exit the spread market (something they apparently later regretted and went to court over*). I used it because there’d been a scandal over contaminated peanut butter made in China, and Kraft (now Bega) was made in Australia using Australian peanuts. It felt safer. But I knew it wouldn’t be hard to get a lower sodium brand.

Woolworth’s Select American Style Peanut Butter (100g): 2600kj, 21.9g protein, 11.4g sugar, 374mg sodium. This was never my brand, but I tried it. To me, it tasted much saltier that the Bega one, but it’s significantly lower in sodium, though higher in sugars. I have no idea where it’s made.

Pic’s No Salt Added Peanut Butter (per 100g): 2488kj, 26.7g protein, 5.9g sugar, 9mg sodium. I tried this a few times, and since it’s made from nothing but peanuts (the regular version has added salt and is 180mg of sodium), it has the same problem as all natural peanut butters: It separates at room temperature, and had to be stirred before use. Every time. I saw advice on the Internet to store the jar upside down, but that was stupid advice: It still separated and I still had to stir it, but it was also very messy. I tried something else: I gave the jar a really good stir, then put it in the fridge. It never gets stiff, but it does keep it from separating. Solved. I liked the taste, which to me tasted like peanuts.

Mother Earth Natural Peanut Butter (per 100g): 2510kj, 27.1g protein, 5.5g sugar, 210mg sodium.
I tried this, but didn’t like the taste, and the separation was annoying.

Eta No Added Sugar or Salt Peanut Butter (per 100g): 2750kj, 23.1g protein, 2.9g sugar, 35mg sodium. I found this just once. It was nice enough, but I the stores I shopped in didn’t routinely stock it, so I only had it once.

Sanitarium No Added Sugar or Salt Peanut Butter (per 100g): 2730kj, 30.7g protein, 3.8g sugar, 2.4mg sodium. I tried this only out of desperation, because I was having so much trouble finding low-salt smooth peanut butter. I don’t buy Sanitarium products because it’s wholly owned by the Seventh Day Adventist Church, gives all of its profits to the church (which is anti-LGBT+, among other bad things), and so the company pays no company tax. This is unfair competition, and I won’t support it or give my money to a church that does things I disapprove of. Fortunately for me, this was flat out terrible. I don’t know if it’s because it was too LOW in sugars and sodium, or the variety of peanuts they used, their processes, or even if it was just a bad batch. But it didn’t taste like peanuts to me. I was relieved.

I tried all these peanut butters, sometimes more than one jar, but there was a lot I couldn’t find, that came out later, seemed too expensive, or any combination of those things. I eventually settled on Pic’s as the best-tasting of the low-salt peanut butters I was able to actually find. However, for a year or so all I could find was the no-salt crunchy, and I only like smooth. I bought it anyway. Then, a few months ago, my usual grocery store suddenly started carrying no-salt smooth again, and I’ve been sorted ever since.

Peanut butter is high in calories, which figures since it’s high in fat—good fats, but fats nevertheless. So, it’s a food to be used is small amounts. After I was able to find ones low in salt and sugar, I had an option for protein that’s plant-based, low salt, slow sodium, and good for both gout and heart health. A total win.

But, this is all about personal taste, too. Other people like things very different from me, and vice versa. That’s fine. I’m just glad that I found something I like that’s also good for me. That’s a good thing. It just took awhile to get there.

*UPDATE: May 1, 2019: An Australian court has ruled that Bega does, indeed, have the right to use the labelling/colours that Kraft (now Mondelez) used when they sold off their spread business in 2017. The US-based Mondelez argued that Kraft Foods Australia had only had a license to use Kraft's labelling/colours, not ownership, and so, couldn't sell it to Bega. The court disagreed. Mondelez was reported to be considering its options.

The products listed and their names are all registered trademarks, and are used here for purposes of description and clarity. No company or entity provided any support or payment for this blog post, and all products were purchased by me at normal retail prices. So, the opinions I expressed are my own genuinely held opinions, and do not necessarily reflect the opinions of the manufacturers, any retailer, or any known human being, alive or dead, real or corporate. Just so we’re clear.

Inadvertent concern making

View this post on Instagram

Been sick for several days, it’s been frequently pouring rain today, and overcast/sprinkley when it’s not, so the LAST thing I wanted to do was get a Warrant for my car, but it expires today, so duty called. I planned on doing this today, before getting sick, before the awful weather, so I guess you could say my plans worked out. 🤔 BTW, how do you like my ride? 🤣 #dutycallsevenwhenyouarenotinthemood 🚙

A post shared by arthur_amerinz (@arthur_amerinz) on Oct 29, 2018 at 5:35pm PDT

One of the worst things about social media is how easy is it to offend people without meaning to. Similarly, it’s easy to confuse people without realising you’re doing it. The Instagram post above is an example of the second one.

Yesterday I had to go to Pukekohe to get my car its annual Warrant of Fitness inspection. This is a safety inspection to make sure a vehicle—any vehicle used on New Zealand roads—is road worthy. I’ve written about this several times before, usually with some kind of resigned-to-my-fate sort of humour. Which is what I did in the caption to the photo.

However, when I began it with “Been sick for several days”, and mentioning being sick again later, I accidentally created the impression I’d had something bad or unusual. It was neither, but it’s been inconvenient.

I had a gout attack because of something that happened last week that upset me, because stress is my major trigger of gout attacks. I first noticed it on Thursday when I took my mother-in-law home after her visit with us. It began as a little soreness in my left ankle, something that’s happened before and it usually goes away in a day or three without becoming an actual attack. This one didn’t work out that way.

My ankle got sorer as the days passed, and by Sunday night I felt pretty miserable. It wasn’t pain, it was the flu-like feelings I get with an attack. Those symptoms are sometimes really bad, and this was one of those times.

I got up Monday morning like usual, but then went back to bed for a couple hours more sleep. Taking paracetamol helped with the symptoms, but I still felt like I had a fever (I didn’t), and, well, like I had “the flu”. So, I rested all day.

I went to bed Monday night still feeling terrible, and wondering how I would cope going to get the warrant the next day. I woke up in the night feeling terrible, took some more paracetamol and wondered again how I’d cope the next day.

Even when I woke up in the morning I was dubious, but my ankle felt reasonably okay, if still very sore, and I didn’t feel so flu-like. So, I went, and made the post to Instagram. The reason I didn’t say I had gout was that I’m much more restricted in why I say on that platform. It’s public, like this blog, but the audience is very different; people who spend a lot of time on Instagram don’t usually read blogs or vice versa. So, the things I say there are always a bit more restricted than what I say here. And that was the whole reason I wasn’t clearer in my post, which then concerned some people when they saw it on Facebook.

In general, my gout is well controlled now, with little more than the occasional soreness in a joint, almost always my left ankle. It never lasts for more than a few days, and isn’t particularly painful. This one has been a bit worse, and has been going on for about a week now.

This all happened, though, against the backdrop of the prescription drugs they have me on which have caused terrible fatigue and memory problems, along with a feeling that’s a bit like an existential shrug of the shoulders: I often can’t work up the energy to do things (like blog), or the motivation, or both. Shrug. “Maybe tomorrow I’ll feel like it,” I tell myself. A lot.

As it happens, I got a phone call today from the facility where I’m due to have a consultation with the cardiologists. They had a cancellation tomorrow and wondered if I wanted the time slot. I snapped it up immediately. I hadn’t yet been offered an appointment, so I have no idea when they’d have gotten round to me otherwise, so it was prudent to grab the opportunity. Plus, I’m not happy about what these prescriptions are doing to me and I’m hoping they can make changes. More on that, I hope, after the appointment tomorrow.

All of that—the fact I was really talking about a gout attack, combined with the real underlying issues that also can make me feel miserable, meant I felt a little, well, embarrassed, I guess, about inadvertently making people concerned. I also felt that right then it was all a little too complicated to explain when the reality, and shorter version, was that I just felt yucky. Shrug.

One way or another, all of this will soon be getting better. Whether I’ll feel up to anything approaching regular blogging again will depend in large part (I think) on what happens tomorrow. If that appointment doesn’t lead to any changes, though, I’ll still have to find ways forward.

This story isn’t over yet. I must try harder, though, to not do any more inadvertent concern making.

My year in health

My Health Journey this year has certainly been, um, varied. While I don’t do “my year in review” posts (because this blog has details of my year that I’d talk about anyway), I think I can make an exception for this subject because it changes so much, and often so fast. So, this is an update on where things stand in my Health Journey at the end of the year; that’ll make it easier for me to check progress at the end of next year.

In my last update, at the end of November, I talked about how I’d discovered the true cause of the gout attack I’d been experiencing. Against that background was my constant battle with fatigue. Both of those now have updates.

I recently began taking tart cherry capsules again, something that had been part of my gout prevention strategy for years. When I started, it was out of desperation, I’ll admit: The prudent thing would have been to check with the chemist first to make sure there’d be no interactions, but the gout attack was going on so long, I decided to use it anyway, with a “it’s just cherries” attitude, and the rationalisation that “if I wasn’t meant to have any cherries, they would have told me, like they told me to avoid grapefruit.”

Whether that was wise or even mildly sensible is kind of beside the point: I did it. More importantly, it DID help—just not completely.

So, thinking about it some more, I remembered was that the research to date was on using tart cherry taken with allopurinol, and I decided to interpret that literally. So, I now take my cherry pill in the morning with my other pills (and not at lunch as I had been). The result has been no further gout attacks, and even the minor pain I’ve often experienced has been reduced. That means that, so far, I can avoid increasing the dose of allopurinol, something I’m quite keen to avoid because the risk of side effects goes up with the dosage. I rate that a full win.

I’ve been battling fatigue ever since going on diltiazem to control my heart rhythm, and to deal with that the cardiologist I saw the end of October cut the dosage of my statin. Nothing much changed for weeks and weeks since then.

In time, my energy levels have improved, if only slightly or somewhat, however, the drug doesn’t seem as bad as beta-blockers were, and they’re dramatically better in one important respect: My head doesn’t feel like it’s filled with stuffing anymore. I can show that with one list:

► December (57)
► November (58)
► October (32)
► September (28)
► August (45)
► July (39)
► June (25)
► May (21)
► April (16)
► March (9)
► February (17)
► January (17)

That list is of the number of blog posts by month, up to today (but not including this post). From January through June, I was on beta-blockers. In April or May, I’d started taking the pill at night so I’d have more energy in the daytime, which did help. Then in June I was weaned off of beta-blockers and onto diltiazem. In September I was hospitalised with Afib, and they increased my dosage of diltiazem.

What all this shows is that I was least productive (in terms of number of blog posts) when I was on beta-blockers, and far more so once I’d changed to diltiazem. This demonstrates that my mind is much clearer now than it ever was under beta-blockers. There were times I wondered if I’d ever get my blogging mojo back, but more than that, if I’d ever get to be ME again. Clearly, I have.

So, while I am more tired than I’d like to be, it is nevertheless such a vast improvement on how I’d been feeling mentally that I don’t really care. My energy may eventually further improve over time, too. Well, I can hope. In any case, I rate that a major, though not full, win.

There have been other, unexpected changes. I don’t drink as much coffee as I used to because I just don’t feel like it. I also don’t drink much alcohol anymore for the same reason. Neither is necessarily good, bad, or indifferent, just reality.

There have been other side effects, in the “TMI” category, probably. One of the new drugs was causing quite a bit of flatulence, which smelled like sour milk. I recently started taking some probiotic capsules (more convenient than eating yoghurt), and that problem has pretty much disappeared.

Those are all the major changes that I’ve experienced over the past few months, and the list of blog posts by moth provides a stark contrast to how things are now as compared to where I was at the start of the year.

The New Year will no doubt bring new challenges. Most do. But for the first time since after the first few months after this whole journey began, I feel like I’m moving forward again. I’ll take that.

My plans for the New Year include working on losing weight and beginning (mild) exercise, two things that were impossible when I was beta-blockers and had no energy, nor when I was enduring gout attacks. Maybe progress on all that can be fodder for updates next year, rather than dealing with new challenges. Like I said, I can hope.

So, all things considered, this year ended up much improved on where it began, and that’s what matters most to me. A lot. Besides, with this post I’ve now achieved my annual target of 365 posts, something that seemed improbable at the start of the year. That, too, matters to me—much more than I let on. See? This year did end well.

Important note: This post is about my own personal health journey. My experiences are my own, and shouldn’t be taken as indicative for anyone else. Similarly, other people may have completely different reactions to the same medications I take—better or worse. I share my experiences because others may have the same or similar experiences, and I want them to know that they’re not alone. But, as always, discuss your situation and how you’re feeling openly, honestly, and clearly with your own doctor, and always feel free to seek a second opinion from another doctor.

On the other hand

Yesterday, I wrote about dictating text to my computer so that I don’t have to use my hand for mousing. What I didn’t say is that I have other problems that I can’t solve so easily. Like the majority of people in the world, I’m very right-handed.

Some 90% of people are right-handed. Around 30% of all people in the world can use both hands reasonably well, at least for some tasks, but only about 1% of the world’s people are truly ambidextrous.

So, like most people, I can’t just switch hands whenever I want to, and this is certainly a time I’d want to.

There are some things that I can do with my left-hand. For example, I can drink out of a glass held in my left hand. I can also… um, uh, well, that’s really about it. Sure, my left hand can hold things for my right-hand, but it can’t do very much other than that. I can’t even pick up things with my left hand as well as I can with my right. In fact, when I use my left hand, it sometimes seems as if the hand belongs to someone else, or as if someone else was controlling my hand—there’s that much of a disconnect between what my brain instructs and how my left hand works

This is a problem because of my gout attack, of course. Gout usually just attacks one joint at a time, but it can affect nearby joints as well. Part of this is because the attack causes swelling in the area around the affected joint, so if there are any joints nearby, they can also be affected because the swelling can make it difficult to move the other joints. Combine that with wanting to avoid pain in the affected joint, and pain can actually “spread” to other joints from lack of use as much as referred pain.

So, a gout attack in one joint in a hand or foot, which has many nearby joints, can potentially affect other joints nearby. That’s why it can be hard to walk or to use a hand in the midst of a gout attack. This is what I’m facing right now.

I could try to teach my left hand to do some things, although I’d obviously rather not need to do that. In any case, the odds of doing that successfully are not very good at all.

Most of the time, I don’t have any problem being so heavily right-handed. It would be nice, however, if I was a little less dependent on that one hand. But, like so many other things about me, it’s just one more thing I cannot change.

I dictated this post, too. On the whole, it did reasonably well—apart from thinking a burp was the word third. Good thing the sound wasn’t out the other end—although it might assume I was reading some earlier blog post or other…

Back and forth

My story over the past few weeks can best be summed up in one phrase: Back and forth. While the overall story has been good—great, in fact—there are nevertheless a few details that I find very annoying. This week gave me more examples.

Last Friday, when I wrote about my progress “Four weeks later”, I talked specifically about the gout that began, really five weeks ago today, and really kicked in the next day. Last week I said:

The gout attack that began, in earnest, four weeks ago today is finally ending. There’s now merely soreness where once there was real pain, and it's less than what I felt at the beginning of all this. A few more days and I should be ready to start walking again.

Well, not exactly.

Over the next few days, things were fairly stable, then yesterday morning I woke up in the morning with a severe pain, one that made walking quite difficult. That continued all day, even though I stayed off my foot, and into the night. It was so bad that I cancelled a meeting I had today because I just couldn’t walk.

This morning, that pain had eased back, and while walking still hurts, it’s way better than yesterday. It’s just that it’s not as good as it had been even one day earlier.

This has happened before, where the gout was getting better, only to have another flare-up. I’ve thought, and even said, that the attack was ending a few times now, only to have it flare up again. I think I’ve finally learned to avoid my optimism (well, wishful thinking…): It’ll end when it ends. I hope.

The other thing that’s happened a couple times is that I’ve pushed too hard and worn myself out, and that's because I was unable to do much of anything physical for so very long, so my stamina is gone. I’ve known that all along of course, yet I keep forgetting it and trying to do too much.

On Friday I went to the doctor, then the grocery story, then came home to clean the house because we were having family come to stay with us for the weekend. None of that is unusual, but for someone with my lack of stamina, it was a lot. The next day, I realised that I’d pushed myself a little too far because I was exhausted.

On Sunday, I went to a supporters get-together for my friend Richard Hills, who is running for Auckland Council and also for Kaipātiki Local Board (something I blogged about last month). I parked some distance away and walked up to the venue, stood around for a couple hours, then walked back to my car and drove home.

All of this was more physical than I’ve been in ages, really, and being on my feet for so long was not, in retrospect, the brightest thing I’ve ever done (although, I did sit down for part of it). It was bound to affect me.

So, entering the weekend worn out, then adding to it on Sunday left me even more tired on Monday. And, being on my feet so long on Sunday probably set the stage for the gout flare-up.

The thing is, I should have known all that would happen, because there’s nothing new in any of it. The problem—which is a weird name for it—is that I feel so well now that I simply forget my limits. And then I’m reminded of them.

So, over the past five weeks I’ve had a real back and forth with how things are going. While I now realise that much of that has been my own fault, I’ll probably forget again before things really are back to normal.

Back and forth is really part of normal life, after all.

Three months later

Three months ago this week, I had my hospital adventure. When I talked about this a month ago, I said that, at that point, it hadn’t really been a tale of progress. It is now, however, and things finally feel like they’re moving in the right direction.

The main problem I was dealing with at the time of my last update was recurring gout attacks caused by one of my medications. I’ve again been “in remission” for a week now, and if this continues for one more week, I can begin the allopurinol to prevent further attacks. Fingers crossed, and all that.

I did have that severe attack in my elbow, and that slowly went away, plus a couple very minor attacks after that, and then they stopped. I had to get a bit creative with my strategies, which seems to have worked. I’ll be writing about that in more detail soon (it’s a story in itself), the point is that my main complaint his, for the moment, under control.

My stamina has been returning, partly because I’ve been moving more. Nigel gave me his Apple Watch, which monitors my activity, telling me to stand every hour, for example, and tracking steps, calories consumed through movement, etc. This has been really useful.

However, I still haven’t started regular walking yet, as they wanted me to do. At first, it was because with all the severe gout attacks, I couldn’t walk at all. Then, when I could walk, I was in other pain and just didn’t feel like it. Now, I’m leery of any risk of injury, no matter how slight that risk may be, that might cause another attack and put off the allopurinol even longer.

So, what’ve been doing are more physical things around the house. Last week, for example, I swept up all the leaves and plant debris that accumulated on our deck over winter (partly as a way go get over the USA’s disastrous election the day before). It was the first time I’d done that since before my adventure, and it was fine—like I should have experienced all along. When I was done, I was a little physically tired, of course, but that went away. I had no other issues.

Gout issues aside, I would never have attempted that in the first month or so after my hospital stay, and right before that I couldn’t possibly have done it. This is a measure of how much better things are now than they used to be.

Still, it’s not perfect. I’m more tired than I should be, and I feel flat most of the time—not depressed, more like disengaged. I suspect the statin may be at fault. I haven’t had any of the muscle pains statins often cause, though, which is one good thing.

The other issue is that my memory has been affected. It was already affected by getting older, but I noticed more problems with remembering things, until my sister and I joked about it in some emails and she said I had A.D.D.—and, while not literally true, it’s a good way of describing it, because that’s really what’s been happening: I’ll be in the middle of something, suddenly lose focus and switch abruptly to something else. For example, I might be writing a blog post, then suddenly stop open up my browser and go to some web page that has absolutely nothing to do with what I’m writing about. It really is as if I can’t focus properly.

All of which I’ll be taking up with my doctor when I next see her. I’m due to see her in about a month to renew my prescriptions, but I hope to be able to see her sooner to get a prescription for allopurinol, so I may have the chance to talk with her about it then.

So, things have improved over the past month as I’ve pretty much become adjusted to my prescriptions, found a way (it seems) to control my gout for now, and I’m both able to move more and doing so.

I haven’t yet seen the cardiologist for the follow-up visit, for a variety of reasons (not the least a strike by junior doctors saw all non-essential services postponed). I haven’t pursued it because I decided that I really don’t want to go on steroids because of their severe and possibly fatal side effects. I have enough to deal with right now, I think, and I don’t want to add another layer of stress and worry.

Fortunately, so far that gamble is working out in my favour. With a bit of luck, which I’ve had rather a lot of in this saga, it’ll all work out. Either way, it’ll give me something to discuss next time.

In the meantime, things finally feel like they’re moving in the right direction.

Update – November 18: I forgot to mention my weight loss so far: As of today, I've lost 6.4kg (14.1 pounds) since my hospital stay. That’s happened mostly because I eat less/better, since it’s only been recently that I’ve been able to move around. Today I also published a post about me being reluctant to talk about this weight loss.

Nothing shocking

Two weeks ago today I had a shocking experience. Well, my heart did, anyway. The rest of me just went along for the ride. And now, two weeks later, I’m mostly adapted to the current drug routine, halfway through it. The middle of next month, it changes slightly. Overall, it's a case of so far, so good.

The day after I got home, I filled my prescription, but I didn’t start the new drug, Amiodarone, until the following morning. They’re having me take two pills per day—which is quite a high dose—for a month, and then it drops to one pill per day. This is supposed to happen two weeks before I get my first blood test to check for any serious side effects, which will show up there, even if I’m not aware of any symptoms. I have no idea why the dose is so high for a month; if I’d known they were doing that, I would have asked.

Some days I’m extremely tired, which makes sense: The drug regime is keeping my heartbeat consistently around 70bpm or less (it’s usually in the mid to low 60s), something they’ve wanted for ages, ever since they put me on beta-blockers; this is the first time it’s actually happened. Twice so far—both on a Tuesday—I struggled to wake up in the morning, and was dog-tired all day long. Other days I can get more done, but sometimes I need to sit and rest for awhile. However, sometimes I have a good amount of stamina.

Because of that, I think this new drug regime is somewhere between beta-blockers at the worst, and the old regime. Sometimes I’m more tired than I was before the afib incident, but usually I’m better than on beta-blockers. Also, my mind is clearer in the daytime, though, like on beta-blockers, it kind of goes mushy in the evening.

What is very weird, though, is that I find it kind of hard to fall asleep at night. Insomnia is one of the side effects, but that’s not exactly what I experience: It just takes me longer to fall asleep—a half hour, followed by maybe another half hour where I kind of doze a bit until I finally fall asleep for the night. This could be another reason I’m tired.

What makes it weird is that in the evening I can be really sleepy, yawning like crazy, and yet I still can’t fall asleep. To help, I now have a cup of chamomile tea every night—I think the nights I’ve had two cups have shortened how long it takes me to get to sleep, but I’m not sure; I’m trying that tonight to see if it helps.

One thing I forgot to mention in my previous post is that because the medicine can cause liver damage, they urge people to avoid or severely limit alcohol intake. I’m doing the former. There are many good alcohol-removed wines nowadays, and some decent no-alcohol beers and even a sparkling no-alcohol wine—well, technically, it’s a sparkling grape juice, but it’s more wine-like than that sounds. This means that when we’re being social, I can sort of play along, even though I’m not drinking alcohol.

I’ve also severely restricted regular coffee, even though there’s divided opinion on whether caffeine causes afib (most experts seem to doubt it does). However, after all I went through, the last thing I wanted to do was to stimulate my heart. So, I have, at most, one per day.

I do, however, drink decaffeinated coffee, and the problem is that most of them actually do have some caffeine—sometimes, even, not much less (if at all) than a normal cup of coffee. There’s no way to know what the caffeine content is because manufacturers aren’t required to list it on the label. Still, according to my own experience (I monitor my heart rate throughout the day) it’s clearly not as stimulating as the real thing.

After the procedure two weeks ago, they also gave me potassium intravenously. My levels were normal, they said, but on the lower side of normal and they wanted to boost it a bit. Potassium has a lot of functions, including helping muscles function properly (and the heart is a muscle…), and it also helps control blood pressure. I bought some bananas last week, and since they became ripe enough this week, I’ve had a banana most days. Can’t hurt to keep my levels up a bit.

A good thing that’s happened is that my blood pressure continues to be really good. I say “continues” because it started when I was in hospital (before the potassium infusion), and that continues. In fact, it’s never been as well-controlled as it is now.

That’s not the end of the good news. Three weeks ago I went to get blood drawn for my routine blood tests, and though the results took forever to show up online, when they did the results were nearly all good—great, even.

I was surprised that not only had my cholesterol levels not become worse since they cut my dose of atorvastatin, they were actually better—normal for all but one measure. Only my “good cholesterol” level is still too low because I’m not active enough—but even that was better than it's been in a few years.

I have no idea why this result was so good. Maybe my combination of drugs was helping, but I suspect that at least part of it has to be down to my avoiding red meat. It certainly didn’t hurt.

The shocking result, however, was how low my uric acid level was—well below what it should be to prevent gout attacks. Back in early April, I went to the doctors for a routine check to renew my prescriptions. I told the doctor about the gout attacks I had late last year, and its possible connection to the anti-coagulant I’m on, dabigatran. The doctor was somewhat incredulous, which I’m used to, but checked the Medsafe site and saw what I was talking about. He said that a gout attack can be caused by any change in uric acid levels—up OR down, and a big change can trigger an attack.

So now I’m wondering if the dabigatran lowered my uric acid levels, thereby causing gout attacks, but is also keeping them low. No way to know, I suppose, but having the levels so low means that—if they stay there—an attack is very unlikely, which is great news. It also means that if they take me off it, it has to be done s-l-o-w-l-y.

Most everything else was completely normal, though a couple numbers were borderline or not quite right, and will need monitoring. My thyroid had one borderline reading, and my liver had one level that was slightly wrong. The Amiodarone can harm both organs. Something to watch.

But wait, there’s more! There was one other bit good news: My National Bowel Screening Programme result came back, and it was negative, as I expected. So, unless something changes—like symptoms develop or some other risk factor emerges—I don’t need to do anything until my next test under the programme in two years.

The good news here is that despite feeling tired and having a little trouble getting to sleep, everything else has been good or even great: The drugs have successfully controlled my heart rate and heart rhythm so far, and my blood pressure is more controlled than it’s ever been. Blood and bowel test results were also good or great. All things considered, I think I have very little to complain about.

Now I just settle in to this routine for the next couple of weeks, until the Amiodarone drops to a normal dosage. I hope it still controls my heart rhythm as well as it has so far. But I’ll also keep on trying to eat and live in more healthy ways as I wait to see what they suggest doing next.

At the moment, so far, so good.

Important note: This post is about my own personal health journey. My experiences are my own, and shouldn’t be taken as indicative for anyone else. Similarly, other people may have completely different reactions to the same medications I take—better or worse. I share my experiences because others may have the same or similar experiences, and I want them to know that they’re not alone. But, as always, discuss your situation and how you’re feeling openly, honestly, and clearly with your own doctor, and always feel free to seek a second opinion from another doctor.