Tuesday, December 21, 2010 0 comments

Week 14 from Baseline

Merry Christmas everyone.

In the last week, I have been (mostly) pain fee. Nice!

The one exception was on a run yesterday. I felt unmotivated to go, and the ordinary weather wasn’t helping my motivation. But I gave myself a kick in the pants and told myself not to be a sooky-la.

After 1.5km, my ankle was a little grumpy, but I think it could have taken the exercise if the rest of my body also agreed to exercise. Since it didn’t, and my ear and throat were aching, I got concerned about a pending cold and went home instead. After all, I don’t want a cold during a holiday.

As it happens, I am not getting a cold. The flesh just wasn’t agreeing it was time for exercise.

In other words, I was a sooky-la.
Thursday, December 16, 2010 0 comments

Week 13 from Baseline

The last couple of weeks have been very good. I have been pain-free and flare-up free. In terms of moving and motion, I have been able to do everything I want to. I definitely feel better, much better than any other time this year. Also, in thinking back over time, I am even tempted to suggest that I feel better now than any other time in the last four or five years.

So given there’s no visit to K this week and no troubles, I have very little to talk about. While as a blogger, that's not the most ideal position to be in, if you’re writing a blog about your medical condition then having nothing to write is a welcome problem. A very welcome problem indeed.

It is a reason for me to celebrate. It mgiht also be the time to think back to this time last year.

Last year, almost to the day, I was suddenly struck down with extreme pain in my left hip and rendered unable to walk. In a few weeks’ time, I would be diagnosed with SpA, but for now, I was in a lot of trouble. My 12-month software replacement project was going live that coming weekend. As Project Manger, this was quite inconvenient to say the least. I hadn’t yet finished my Christmas shopping. My parents were coming for Christmas and for the first time ever, Brian and I would be hosting them. I was in pain, then on drugs for pain, while having to work. It was quite messy. And I was very very pissed off.

This year, I am heading into Christmas unconcerned about my mobility, or lack thereof. I am looking forward to going away for Christmas. I have planned quite a few activities over my three week break all of which I would not have dreamed of doing a year ago. I finish work this Friday. I have indeed finished all my Christmas shopping.

So! Who has the bubbly?
Wednesday, December 8, 2010 0 comments

Really, it starts at week 12

I took my first dose of Adalimumab! I think. Unless I really was taking it before. Oh, never mind. I'm sure you get the point.

The visit to K yesterday was quite the busy one.

The week 12 milestone was so much more than simply coming to the end of the of the time that all test rabbits patients may be taking a placebo. There are several things I need to do, or need to have checked every visit. Blood tests, surveys, blood pressure, answer questions, joint assessments and dose.

But at week 12, additional things were required. There were many more survey pages. I believe that I had to re-do the same survey pages as per my original baseline visit. It’s hard to remember exactly but I think they were a repeat. My weight was checked. There were one or two additional tests and a series questions and an examination by a doctor. The General wasn’t there so another doctor checked me out. He was the one I saw at my second visit. I gave him a bit cheek and he returned serve. I like him.

My CO reports all tests from last visit were fine. I am, once again, unremarkable. I was also very pleased to report a very happy last 2 weeks, culminating with the two jog sessions. I haven’t been able to go on another run since last week, but that’s thanks to the fact that Australia’s 15 year horror-drought has been broken by dumping 15 years worth of rainfall in 2 months and does not have anything to do with my aches and pains.

Oh, and under no circumstances am I allowed to stop Salazopyrin. I have been told.
Monday, December 6, 2010 2 comments

Excuse me Belvedere, but my pill bottle is empty

Back when I commenced in the trial, The General and I had a short and sweet conversation about stepping down from taking Salazopyrin given I was about to commence on Adalimumab. After all, who want to stay on several different prescription pharmaceuticals when only one will do?

The General wasn’t all that keen to have that discussion at the time and had valid reasons for this. I was strongly advised, which I always take to me a non-negotiable order, to keep taking Salazopyrin because for the first 12 weeks, I may very well be injecting a substance that treats arthritis symptoms about as well as sucking on a Chupa Chup while standing on my head.

But tomorrow, is Week 12 from Baseline. Tomorrow I will be back at K for another round of assessments and surveys, only this time I know what I will be injecting. In this trial, Week 12 marks the end of the 50/50-chance-you’re-on-the-placebo period. This is just as well because last night, I took the last of the Salazopyrin in my possession and I’m out of repeat prescriptions.

I would love to suggest that leaving me with an empty Salazopyrin bottle the day before commencing on Adalimumab was the product of brilliant planning. I would then have a perfect opportunity to work in my favourite over-used 21st century buzzword; ‘synergy’ or ‘synergies’, just for kicks. But sadly for me, and lucky for you, there’ll be no working in unimpressive buzzwords I like to constantly pick on. Not today. Because I assure you, it wasn’t planned at all. Just coincidental.
Sunday, December 5, 2010 0 comments

The Diary Has a New Design

As an IT Professional working primarily in the web space, one thing that is guaranteed to turn me peuce is a website interface that doesn't work.

'Doesn't work' can mean lots of things, but you know it instantly when you see it or try to use it. Where the Diary was concerned, 'doesn't work' meant a background image hastily created just to put something there. I admit little thought went into it and I have never really been happy with it.

So the Diary has undergone a face lift. I think it looks pretty good, and I would like to thank the creators over at Templates Block for what is clearly some of the best Blogger templates out there today.
Tuesday, November 30, 2010 1 comments

Week 11 from Baseline: Running is where it all started

"Running is a big question mark that's there each and every day. It asks you, 'Are you going to be a wimp or are you going to be strong today?'"
- Peter Maher, Irish-Canadian Olympian

It was while I was on a lunchtime run more than six years ago that I rolled and ruined my left ankle. Back then, I expected that it was only a matter of weeks before I could get back to running and enacted a simple plan. Rest + Rehab = Run.

Here’s what really happened.

Rest + Rehab + Orthotics + Rehab + Trauma + Operation + Operation + Rehab + Arthritis + Medication + Medical trial = Run

Okay so it was an unexpected journey getting there. But I got there.

Since commencing treatment, while things have improved largely to my satisfaction, I confess I have been a bit reluctant to give it another crack. When I finally stepped out to hit the pavement, would everything really be okay? Would my body allow me to run again? I shudder at the thought at having to face the prospect that despite the treatments, my condition might be such that I can’t. And if that happened, I wasn’t really sure how I would feel. I imagined I would feel really bad. And there lies the curse when you put too much value on something that really should be looked upon as a cherry on top rather than the cake itself. Running symbolised freedom from my broken and pain-riddled ankle. Conversely, the inability to run meant I was a prisoner to whatever it was that my jailer, my body, would allow me to do on any given day. For quite a long while, that wasn’t very much at all. Pre-diagnosis, my inability to run symbolised the fact that no one at all could tell me why my body was broken. But that’s how important running, or having the option to run at least, is to me.

Urgh, I can be quite undignified in my outlook sometimes.

But it was time to stop being a wimp. So last Friday I pulled on Brooks and set off. And boy, it was brilliant. Aside from being unfit, everything else was great. No pain. No swelling. No need for Ice that never worked anyway. No disappointed afterthoughts. Instead, I spent the rest of the afternoon giggling and prancing around the house like a drunken clot. Again, not very dignifying, but ah well. Sometimes, these things must be done.

The next day, I still felt great. The muscle soreness I had was the most welcome pain I’ve had in years. It went so well that yesterday, I decided to have another go. This time, I went for a little longer, somewhere between 3-4km. Last night, my legs were quite wobbly but my ankle pulled up fine. A wee sore, but what I would expect from someone who, arthritis aside, has subjected their left leg to two injuries and two surgeries.

But at the risk of sounding like an over-dramatic reality TV show contestant, I have reached the end of that particular ‘journey’. I can run without blowing up like a balloon and without crippling pain. I may never run more than once or twice a week and for how many years I can do this for I don’t know. I also I know I need to tread carefully and so I don’t have any plans to sign up to any summer events just yet. But I’m as happy today as I was the day I was diagnosed because those two big questions ‘What the hell is wrong with me?’ and ‘Will I ever be able to run again?’ have finally been answered.
Wednesday, November 24, 2010 0 comments

Week 10 From Baseline

In the last week, I’ve not been inflicted with any arthritis symptoms at all. Oh hooray!

In the last week, my left hamstring has been grumpy. Boo.

This was unfortunate because it put my idea of trying out a short run on the backburner. I am disappointed about that. I was looking forward to writing about how it went, how unfit I found myself out to be, and finally, when I thought I might be able to give it another go.

The hamstrung hamstring started on Thursday afternoon. I was just doing my usual thing at work which comprise the types of activities one cannot call taxing or physically strenuous. My lunch break consisted of a short walk across the street to the pub in order to provide a sensible send off to a colleague who was finishing his contract that day. I would say it was filled with booze, politically insensitive jokes and naughty shenanigans like the old days, becuase I could then suggest I did the hamstring doing something stupid. But sadly, those days of long lunches of drinking as much booze as you muster before dragging your drunk arse back to the office at 4:00pm ended the day I stopped working for the Finance industry.

In other words, I don’t know what caused it.

Why have I mentioned this? Because I have little else to mention. At least symptomatically. Oh hooray!

Today is a dosing day. I only remembered during the middle of a Top Gear episode. The next ad break left no time to think about if I was going to be brave enough to jab into my thigh so I rushed though the administering the dose and filling out the diary refusing to miss even a second of Hammond, May and Clarkson tooling around in self-made limousines. Ah, those three are simply brilliant and I could never ever get bored watching them on Top Gear.
Tuesday, November 16, 2010 0 comments

Week 9 from Baseline

9 weeks from baseline = a little over 5 weeks until Christmas.

It is three weeks of time off over the Christmas period that finally led me to be able to satisfactorily clean out my stressed-filled and study-focussed thoughts overwhelming my happy state in the last month. Those thoughts have now been replaced with the thought of spending nine days in Noosa where the hardest decisions I will have to make is choosing which cocktail I will have for breakfast followed by the terrible quandary I will be faced with when I have to choose between doing a little writing or immersing myself in the writings of others’. Goodness knows what will happen if I choose to read given I will then have to agonise over the choice between the ever-growing number of books I have accumulated over the year yet been unable to indulge in.

Yes, I’m sure it will be awful.

I have high hopes for this holiday for another reason. This summer will be the first holiday in years I anticipate I will be largely pain free and I am confident I will be physically able to do the things I want to do, other than slothing next to a pool. Last summer, I was finally diagnosed, but it still took until the end of February before the Salazopyrin started to make a difference. Last summer, I could barely walk more than a couple of hundred metres at a time. My physical limitations were very frustrating given we had two very active American visitors staying with us.

Brian the American’s idea of a great holiday is more about doing nothing and less about filling your days with loads of activities. I am the opposite. My results from Salazopyrin have led to me being able to enjoy start a playful argument about my intentions to book an itinerary full of strenuous activities for the both of us I have labelled as ‘quality time’. Brian will of course have none of it. This is an playful debate we both like to start with each other as much as possible before it was rendered void given I was no position to do much in the way of physical activity. It is an argument we have both missed having. It is the little things you miss that make the difference.

The flare up from last week has gone and once again I am back to being largely pain free in all joints. I have been debating whether now is the time I should give a short run a go. While I don’t feel any change in my condition since commencing in the trial, it has changed for the better since commencing on Salazopyrin. I am less concerned about how my ankle pulls up and more concerned about how my lungs and muscles will pull up. No doubt it will be unpleasant to start with, but I am keen to give it a try in the coming week.
Friday, November 12, 2010 1 comments

Week 8 from Baseline

This week has been a week of 8s. If the Chinese numerology is to be believed, I should put away my laptop, get into my car, drive in a straight line to number 8 Whiteman Street, find the nearest Roulette table and bet everything on 8 black. On Monday the 8th, I celebrated my 8th wedding anniversary. Tuesday marked another anniversary involving the number 8. This time, it was my 8 week anniversary of my relationship with Adalimumab and my participation in the medical trial. To celebrate that milestone, a visit to K was in order.

At week 4, I was informed I was deficient in a type of white blood cell called Neutrophils. At that visit, they took more blood and I was keen for the results. Fortunately, my Neutrophil count is one again as it should be so it appears that around four weeks ago, I picked up a virus and my Neutrophils put on their fatigues and war paint and went into battle. I am very pleased with my immune system. It still appears to have satisfactory capabilities to it and the TFN blocker that I may or may not be receiving haven’t yet smashed it into oblivion.

Gooooooood little system-y solder. I love you.

On Monday, those following my twitter meanderings might have seen this.

'Grrrrrrrrrrr hip flare up! Owwwwwwww, oh for fucks sake' hashtagged with #spondyloarthritis

On Tuesday my hip hadn’t improved but at least, this time, the pain was limited to the left hip and not both hips. Flames found all the evidence she needed of my flare up. Not only did she find evidence there, but also in many of my joints and the various other areas she likes to poke and grope. I believe it was the first time I’ve been in the middle of a flare up whilst at K. Certainly it has been the visit where I lost count the number of times I delivered ‘yep’ and ‘ouch’.

I was also honest about the amount of pain pills I’d swallowed recently along with my increased stress levels. After all, given that I blog about it, there’s really no point trying to hide it. Even if I didn’t blog about it there would still be no point in hiding it given the codeine shows up in my blood tests.

For some reason, my CO is insisting that I should shoot the Adalimumab into the upper thigh because other patients are telling her that jabbing into the upper thigh is much less painful than jabbing into the stomach. My problem with this theory is that I vividly recall a moment in my past when, as a result of being a recipient of one of these ‘painless’ jabs I couldn’t stop the expulsion of a blood-curdling scream while being inside a doctor’s clinic and almost needing to be physically restrained.

Awful awful memories.

Admittedly, I was a 9yo at the time but that matters not. The fact remains is that I attribute a jab in the upper thigh once as the most horrifying and painful experience of my life up, at least up until that moment, and I no desire to entertain the thought of having a jab there again. I fully appreciate logic plays no part in my reasoning but then again what fears are ever based on logic?

CO: Other people are telling me that it’s much less painful to inject into the upper-thigh.
Me: Ahhhhh, no.
CO: You really should. I’m told it’s much better.
Me: No it won’t be.
CO: Go on. Do it.
Me: I’d rather go to jail.
CO: Really? But you’re concerned over nothing.
Me: I don’t care what anyone else says. I’m not doing it.
CO: Awww, go on.
Me: No.
CO: Do it.
Me: Make me.

Later on, after Flames had been and gone, I pick up the syringe to administer the Adalimumab. As I did so, told her about the residual pain after my last jab two weeks ago and I joked that I must have jabbed an intestine (which really isn’t possible).

CO: You know where you don’t have intestines? In your thigh.

Smart arse.
Monday, November 8, 2010 0 comments

The Stress of Mass Distraction

Tomorrow, I will mark off 8 weeks from baseline. Week 8 involves a visit to K where joint assessments, blood tests, and ever-laughable surveys will be involved so I will be posting a progress report regarding all that later this week.

Today I wish to talk about stress.

Those that know me will probably nod their heads in agreement when I suggest that I am a person who would rather be busy than not. Whether it is my work, my volunteering, contributing to the projects of friends or colleagues, writing, my adventures, or <insert any one of the many things I may be occupied with here>, I am always dancing precariously on that thin line that separates ‘too much’ from ‘seriously too much’. Thanks to my propensity for the tango reasonable doses of positive pushing-thy-boundaries stress are not foreign to me and not entirely unwanted. All else being equal, this is when I’m at my best both analytically when working, and creatively when I am not. The hardest part for me is getting the balance right and being wiser than I used to be in accurately determining what I can achieve and can’t achieve.

During October and early November, stress is inevitable. Early November is the time when I sit my end of year exams. My work projects are always at a point of criticality before the Christmas slow down. My projects of love are either kicking off or drawing to a conclusion. I am busier than all other times of the year. Bloody Nora, if I didn’t feel pressured or stressed at this time of year I would think there would be something quite wrong with me. Before my diagnosis and commencing on Salazopyrin it manifested itself with sustained and painful Uvetits. It has been this way every year since 1995 when I came up with the bright idea that I should head to University and add a 25 hour weekly study workload to my already jam-packed life without taking much else away.

What’s different about this year is the fact that I don’t have a graph plane large enough, a hole deep enough, a tape measure long enough to measure the sheer intensity of the stress that I have been inflicted with. It was genuinely awful.

I don’t know about you, but the first sign that I am really stressed, either positively or negatively, is being unable to sleep. When the going gets tough, really tough, the mind gets going. It will churn over, and over, and over, and over again the matter that matters and at these times I find it impossible to put the thoughts away when I want to. When I need to sleep on it you will find me on the couch at 3am trying to distract myself into slumber. As long as it is a temporary issue, and is almost always is, it does not bother me too much that I sometimes feel this way. It is simply a pathway to the outcome I either hope for, or which I am destined for. I’m sure you know how this feels. I’m sure everyone on the planet feels this way sometimes. In these situations, only two things are certain. Firstly, time will take care of what you can’t and there’s just no point worrying about things you can’t control or influence. Two, time will not be forced.

What is not normal, and what I am not used to at all, is being unable to focus on anything at all. All week my mind has been less like Usain Bolt running the 100m in world record time and more like Usain Bolt jumping around incessantly on a pogo stick and refusing to get off.

On the good side, I did get sleep. On the bad side, I got sleep only because I exhausted myself so much I literally passed out the moment my head hit my pillow. I also felt so worked up to the point of nausea. The very thought of eating was enough to bring on the nausea when there was none. The filthy headache I mentioned last Monday hung around all week and was joined with a moderate amount of backache. The back pain was thanks to the incredibly uncomfortable chair in my study I keep meaning to replace any my choosing to skip a Chiro appointment two weeks ago. The pain I was experiencing wasn’t related to SpA but just like when the SpA gets nasty, I pushed down an endless supply of Ibuprofen and Codeine down my throat and washed it down with coffee. Naturally, the results of self-medicating like this was even more nausea and general discomfort.

I can only imagine the hideous sight I must have been on Thursday as I contained myself to my study while I attempted to force my focus on nothing but Friday’s exam and failing miserably. On Friday morning I couldn’t even swallow my morning Salazopyrin tablets. The result is that I now weight a little over a kilo less this week. For someone in a 5 foot 3 inch (160cm), 55kg (now 54kg) frame, this is not a good thing.

Since Friday, I have calmed down considerably although I still feel I have a little way to go before I am back to my normal self. I imagine a good massage followed by a glass or two of De Bortoli will take care of the rest. Oh, and time. I forgot time.

The reason I have chosen to document my stress here is fairly simple. Stress is natural and like all things natural we should not be afraid of it. Nor should we be afraid to talk about it or admit it when it happens. Just as importantly, I feel that charting only my arthritis symptoms in terms of pain and swelling is akin to peeling the skin from an apple, putting the skin into a display case and saying ‘this is an apple’. It is simply not true to suggest that one’s feelings and in particular one’s stress levels, can or should be consigned to the archives of irrelevance or ignored. SpA is an auto-immune disease and deseases that affect systems of the body can be altered fairly easily by changes to one’s psychological state. Just like the apple and its skin, my body and my mind can’t be separated and still called whole. It would simply be just another misrepresentation.
Tuesday, November 2, 2010 0 comments

Week 7 from Baseline

I’ve been obviously subject to an overabundant supply of uneasiness on several issues that are to do with accident and trauma, the media, equality, freedom and right to have an opinion, and nothing at all to do with my condition. The evidence of this is in my Tweets, on my blog and elsewhere I care not to mention. To some degree, I put it down the fact that I have an exam coming up on Friday. The exam is on a subject about social and political matters, particularly pertaining to women, democracy and human, social and political rights. I believe in these things. I chose to take this elective subject as part of my studies because of the fact I care about these issues very much and if I bang on about these issues in the public realm it’s because they’re important.

But no one likes a loud mouth espousing her beliefs too much. So this opinionated anonymous nobody will do her utmost to cease the soap box activity and return to regularly scheduled blogging.

The fact is that in the last week I have been pain free. Being pain free has lead to my mind being distracted into my exams, into my work and into my public umbrage. I’m delighted with this. Being not distracted into thinking or feeling my condition has been quite a long time coming. My only issue is a minor two-day headache which tells me I’ve worked my arse off lately, am under a little stress and in dire need a holiday. A little Panadol and the most recent episode of Dexter and a good nights’ sleep will fix that.

Week 7 means no visit to K which means no tests, bloods, obs or assessments. Week 6 is also not a dosing week. So I’m going to choose to remain distracted in the content of my text books because I have an exam to pass!

Why Stephen Fry (and gay men) should speak on women’s sexuality issues

Something I promised myself I wouldn't do when I stared this blog was use it for a soap box too often. But I'm mad as a hatter about this whole bizarre situation regarding Stephen Fry. Unless you have missed it, Stephen Fry made some comments on sexuality and said that men and women think differently about sex.

Specifically, he said men think about sex more than women. Correct. He also said that women don’t want to believe it and tend to argue that women are just like men. Also correct.

It’s also true that during moments of enlightenment and frank dinner-chatter with some members of the male species, this argument has been made to me before. Furthermore, it was put to me separately by men of both homosexual and heterosexual persuasion. They argued quite fervently all men are known to feel this way on occasion whether they are willing to admit it or not. Now I don’t know if that’s true, but wasn’t that the very point made by Stephen?

As a woman, I don’t go through times when sex simply can't leave my mind as much as I want it too. Certainly not for days on end. I also don’t know any women who suffer such thought patterns, although I’m sure there are some out there. Generally speaking, he is right. Women don’t know what that feels like to have a penis that sometimes drives your mind to complete distraction.

I can say this quite comfortably. Just as I can say quite comfortably that men will never know what it’s like to feel crabby, teary and cramped all over during the monthly visit from Aunty.

The opinions on Stephen Fry regarding this matter (delivered by Stephen Fry’s own mouth) are here

Since the publication of his view was repeated in Attitude Magazine, his comments have been twisted into such sensationalist headlines like “Stephen Fry thinks women hate sex and gay men are promiscuous”. The rhetoric in these articles takes his comments out of context if they have not been blatantly changed altogether. You can just imagine the revolt he copped. It was then that Stephen Fry, displayed his hurt and anger before leaving Twitter saying 'So some fucking paper misquotes a humorous interview I gave, which itself misquoted me and now I'm the Antichrist. I give up'

Gutter journalism happens far too often. It also happened with Joe Hockey last week when he submitted ideas on a complex and significant area of policy in a public forum. However you'd be hard-pressed to find the details of the policy he put up for debate in any of Australia’s main stream media. His comments on the banking sector (which received Senate support I might add) were completely drowned out thanks to the media’s preference for a firestorm and cheap tabloid fodder designed to drive traffic to their websites.

But let’s put aside the reasons why the mean-spirited shouldn’t be allowed to do journalism. This is not why I’m really angry. What I’m really angry about is this notion that some have suggested, Germaine Greer being one, that a gay man has no business speaking on women’s sexuality.

Excuse me?

One of the fundamental principles of our western liberal democracy is equality of all people. Equality does not mean people can speak on matters only provided they meet a certain set of conditions. Freedom and free speech are in there too. So if we believe in the principle of equality this means that all men and women have the same rights to speak about issues of sexuality as anyone. To suggest that gay men can’t speak about women’s sexuality because they “haven’t been there and couldn’t know” is simply outrageous. It’s just as outrageous for someone to suggest to me that I can’t voice an opinion or thought on what it’s like to have a penis and wear a condom or what Alice Springs might be like to visit when I’ve never physically been there.

Homosexual men are generally considered ‘safe’ by women. What I mean by that, is that we know gay men don’t want to get into our pants and as a consequence of that we feel safer around them and more open and willing to engage them in honest and frank conversations about sex and sexual issues compared with heterosexual men. It also seems to me that gay men are largely more sensitive and aware of their own feelings than heterosexual men, or if that’s not the case, they are more willing to admit and discuss them. Perhaps they also feel ‘safe’ around women. This self-awareness and expressiveness about emotions and feelings aligns more generally with how women work. So it seems to me that many gay men might be put in a position where they are able to make more accurate representations on the important subjects involving women than heterosexual men can.

I don’t agree with Andrew Bolt on his opinions regarding the environment (or much else for that matter) but I respect the right he has to make that opinion and blog about it. If you don’t like it, don’t hate all over the place, use your body parts to click away, block the trolls, turn the knob (pun intended) or whatever you need to do to switch it off. This is the beauty of the online world. You see what you want to see and you can customise your experience in any way you choose. This is something you can’t do in quite the same way inside other mediums, so take advantage.

Without this right to equality and free speech along with our respect for the rights of equality, we not citizens of democracy but are put back in the world where subjugation rules and homosexual men, women, Aboriginals, Muslims and every other marginalised group is left feeling unworthy and unwanted.

I’ve heard Stephen Fry speak a lot on issues and rarely does he speak without thought or with undue consideration. Even if I believed he said these comments as they have been printed over the last 24 hours, I can never support the suggestion that homosexual males, including Stephen Fry has no right and no basis on which to make them.
Saturday, October 30, 2010 1 comments

Soap Box - The Tragedy of Trauma

There have been several occasions through my work with St John Ambulance I have treated people with extremely serious and body-altering physical injury and have seen the very worst of physical, emotional and psychological trauma.

Christmas will soon be on its way. This is supposed to be a happy time of year when families or groups of people get together and celebrate. They may celebrate a religious holiday, or simply cerebrate the end of a year. What they are celebrating does not matter. But it is an unfortunate reality that for some families there will be no celebrations.

I encourage everyone to watch the following video and remember it the next time you get behind the wheel of a car. Remember your loved ones shouldn't have to go through this and those of us who attend these scenes and see first hand their horrific results shouldn't either.

Tuesday, October 26, 2010 0 comments

Week 6 from Baseline

This week I've had a bit to whine about and given the chance, I can whine with the grumpiest of the grumpy old men. But aside from 5 minutes of sharp pain in the left foot, over the last few days the pain has subsided quite a bit and I have been pain free.

Nor can I bang on endlessly about today's daft survey questions. As I mentioned last week there is no visit to K Headquaters. So no survey, no blood test, no Flames assessing every joint in my body and no comforting feeling knowing that my CO was there as I infuse myself with a subcutaneous injection.

But I got through it and like every other week day this year, got on with facing the arduousness task that is the daily work commute.
Friday, October 22, 2010 0 comments

Brutal Days

The last two days have been relatively nasty. The offending joint is my still my left hip.

The amount of sleep I had on Wednesday night was miniscule. But Thursday marked only four days since we reached the only project milestone that really matters at WorkWorkWorkWork. Furthermore, it was the type of milestone that was high-profile, was equidistant from the start and end date of the project and affected every department at WorkWorkWorkWork Headquarters.

This is one of those moments in every project when a Project Manager needs to be seen and ready for some responding action. Also, I had a meeting in which all team members from every department would be in attendance. The first since the big milestone was reached. There was little choice. The only excuse I consider acceptable for absence on my part, under such circumstances, is death or the office is full of spiders.

I got up in a lot of pain in my left joint hip. While standing up was possible, but standing up straight was not. The straighter I was, the more pain I felt. Stiffness wasn’t a problem. It never is. Walking and moving was very difficult and quite painful.

Limping around the office in a 160cm ( 5.2 ft ) frame that weighs 55kg ( 120 lbs ) can’t help but attract attention. While I quite enjoy attention in most cases, I’d prefer that any public reputation I have not be entirely based on the fact that I can have the appearance of a harrowed cripple. But I am who I am, and I stopped worrying years ago about the things I can’t do anything about. Occasionally having the appearance of a harrowed cripple is one of those things.

But there is a flip side. Seeing others react to your situation of difference can be quite interesting if you, like me, are a people-watcher. Those that know me have seen it all before and they know how I manage it. They are no longer shocked or surprised or uncomfortable and as such, their reactions are entirely predictable and boring (sorry all!). However, a lot organisational upheaval has occurred at work. Not only have I moved departments, I moved to a different floor. On my new floor there are not many people I have worked with and many more staff who are fresh off the street. No one has seen me in the throes of a violent flare-up. Eventually they will get used to it but in the meantime, seeing how different people react to the same visual presentation can be a very fascinating insight into the beauty and diversity of human behaviour.

I lasted until 2pm until I ate some painkillers. They don’t reduce the pain but they do help in other ways. They were enough to take the edge off and get me through my 3pm meeting.

My sleep last night (Thursday night) was better than Wednesday night but it was still broken up, I was still in pain and still limping. Since, I had no meetings, and no anticipated disasters, I rang The Boss who agreed to me working from home. Around 3pm the pain started to ease a little. It has gradually declined since.
Wednesday, October 20, 2010 0 comments

All good, then not so good

Yesterday I started to think that this blog wasn't going to be all that interesting. This is because in the last few weeks my joints have behaved themselves and pain has been almost non-existent.

That changed a little over an hour ago. My left hip gave a sharp sting announcing its presence. It occurred when I was sitting on the couch with my laptop on my lap. The sight of me with a laptop on my lap while on the couch is common particularly in October. October is always about splitting my time over a bit of out-of-office work, a bit of exam revision, a bit of reading, and a very little bit of any number of projects I have going on the side at any one time.

I was sitting half reclined with my legs stretched out and my feet crossed on the floor. There was nothing bizarre or pretzel-like about it. As I drew my feet closer to the couch and sat up to reach forward, my left hip shouted ‘Allo. Remember me?' and from that moment on my hip hurts each time I move it. The good thing is that if I sit still, it is not painful. I can stand up and no other part of my body feels affected right now.

One of the things I reflect on at these times is the fact that I picked up on this factor with my ankle years ago after I starting keeping a log of the pain I was experiencing. It was so confusing to me back then yet it is so obvious now. If I regret one thing about that period it was that I never asked Dr Flowers about it. I asked everyone else, but not my General Practitioner. Yet it was Dr Flowers who sent me straight to The General in December when my hip flared so badly.

So if there's a lesson to be learned, it is that once every so often, we should all put into our schedules an appointment with our GP, even when we are feeling well. We should and use that visit to talk about ourselves in more general terms. We hear it all the time, but we rarely do it and we all use same book of excuses. 'This isn't the week to be sick' and 'I'm not dying and I can't be arsed’ are two I commonly use. The only times I tend to go and see Dr Flowers is when I have an infection bad enough to snuff me out completely. Dr Flowers will always scold me before handing me a prescription for an antibiotic and the obligatory medical certificate. When you’re in such a state, your face resembles a glazed donut and feels like it’s been stuffed with marshmallow, so the thought of lingering conversation with your doctor and exploring any nuances you have ever been curious about since your last visit, is the farthest thing from your mind. At least it is for me.

If I ever start taking my own sensible advice, I'll let you know. In the meantime, all this talk about glazed donuts and marshmallow has put me in the mood for something sweet.
Wednesday, October 13, 2010 0 comments

Week 4 from Baseline

My third visit to K Headquarters. This is a visit that came with take-away!

When I left K today I left heavier than when I walked in. In my possession, was a blue binded book that says 'dosing instructions' and 'dosing diary' on the cover. I also left with an dark blue thermal insulated cooler bag. Inside the bag were some gel cold packs, a box containing my next Adalimumab dose, and a sharps container.

The bag is soft so it can be collapsed and flattened really well. The zip is really sturdy yet doesn't appear oversized. It's lined with silver PVC materail and on the outside it has a pocket in the front. It looks a lot like this one. Usually, the syringes of Adalimumab goodness are stored in the fridge but when you are on the move and need to take your goodness with you, this is the tool for transport. Given how much time I am spending interstate on business lately, I expect to use it a lot.

I love this bag for other reasons. Lets be honest, it's not a medications transport device, it's an Esky. A couple of sausages, a small salad and some cutery, a summer's day and you're ready for a BBQ at your mates' place. I love it and I can't wait to put it into use. Strangely enough, it my CO who pointed out it was the perfect size for a six-pack.

But lets get to the details of the appointment.

My CO reported 'something' in my bloods from two weeks ago. I am a little deficient in a certain type of white blood cells called Neutrophils. Specifically, Neutrophils are used to fight bacteria infections, as opposed to viral or other infections. My CO tells me Adalimumab is not known to cause effects with these specific type of white blood cells so they are not concerned about it yet and suggest it may be a 'blip'.

I assume when my CO says 'blip', she is using medical terminology to explain that it is a deviation from the population of Neutrophils that is usually observed due to a currently unknown anomoly and it is likely that the circulatory system will be successful in its efforts to self-correct. Blip works for me.

The 5 pages of surveys reflected the green tick I gave yesterday.

The General came in to see me and told me a story about how he was in a conference and saw some study data of TFN blockers. The key speaker, whose name unfortunately I don't remember, was a Grand Poobah in the world of Arthritis research and it is obvious that The General holds this person in high esteem. That impressed me since I suggest that there are likely to be a few others that hold The General in such high esteem. The General confessed to dropping his jaw when he saw how remarkable the TNF blockers can be. He got quite excited when talking about it and I really do enjoy seeing the passion and love The General has for his vocation.

Flames came in to do my joint assessments. For the first time, there was no swelling in my right elbow. Given that I never actually knew my elbow was swollen prior to my baseline assessment, and given that I haven't had any complaint to make about my elbow, the news had no real consequence for me except knowing it wasn't there anymore.

Since I had jabbed myself twice on the right side of my tummy, this time, I jabbed myself on the left side. Since the sting I felt was the worse of the three shots I've had so far, I might stick to the right in future.

My next appointment is 8 weeks from baseline.
Tuesday, October 12, 2010 0 comments

Next time, I will write lines

I humbly apologise to my CO for not setting notification alarms for our appointments. I understand that my failure to do so was the reason I missed today's appointment.

I will be doing 20 pushups as punishment at our rescheduled appointment tomorrow.
Monday, October 11, 2010 0 comments

Week ending 10th October 2010

You know what? I feel pretty good at the moment.

Over the last two weeks, my hip and my ankle have been behaving themselves like children who become perfect little angels because they want an expensive toy for Christmas.

But being the angels they were, I give the fortnight a big green tick.

There was only one glitch to an almost perfect record. My right achilles tendon, the immediate area around it and the area where the intermediate and laterial cuneiform bone are gave me a little soreness in the evening yesterday. It was a lovely day so I spent the day in my birkenstocks and in bare feet. It always gave me soreness in the same places under the same conditions. The pain and discomfort levels hadn't changed from last year, and I would give the scope as a 3 for the time the pain and discomfort were present.

I see this as evidence of any of the following scenarios:

1. The birkenstocks are the problem.
2. The drugs haven't kicked in yet.
3. I am on the placebo.
4. All or part of this is not due to arthritis and is a result of the trauma.
5. All or part of this is is due to both trauma and arthritis.

No idea really.
Monday, October 4, 2010 0 comments

Week ending 03 October 2010

Overall, the week has been average, but not in a negative way.

On a positive note, I spent Saturday at the AFL Grand Final v2. Normally when I spend all day at a duty, the left ankle always pull up sore and I cannot recall a duty when it didn't. When I go on duty, it is the degree of soreness I will endure at the end of the day I often wonder about. I always have residual soreness. I have occasionally wondered if it had to do with the boots I wear given that there are often duties you spend when little, if anything actually happens. When I got home on Saturday night, I observed that my ankle felt as good as it did when I got out of bed in the morning.

The yin to my yan was last Monday, Thursday and again on Sunday, the day after the Grand Final. But given I spent last Sunday demanding my feet to walk me around Altona for a few hours, a bit of pain on Monday is no real surprise. Wednesday there was noticable pain in the achilles tendon. Or under it. I am never really sure given that palpating the tendon itself doesn't hurt. Yesterday was the day after the Grand Final, but even so, since the ankle wasn't sore after the duty, it didn't make a lot of sense it got sore yesterday.

In all cases, it was the dull ache as opposed to the sharp pain which since starting on Salazopyrin, I don't get anymore. The tendon pain is a sharper when, when walking, the weight transfers from heel of my foot to the front and I push off. Its the pushing off that hurts, but not enough to render me limpy on this particular occasion.
Wednesday, September 29, 2010 0 comments

Week 2 from Baseline

Today was my second visit to K, and second treatment of Adalimumab. Fortuantely this time, I actually got the needle of the syringe past the skin on the first attempt and avoided a repeat of the first awkward attempt.

The survey I needed to complete today was only 6 or 7 pages long and I ripped through it fairly quickly. My CO said some of the survey questions were a little on the subjective side and she would be right. Many of them are terribly subjective.

Here's an example.

Have you experienced any pain in the last week? Place a vertical line below crossing the horizontal line.

0 ------------------------------------------------------------------ 100

Some questions specifically mention pain that is related to SpA. Some questions don't. So let's go with the theory that since this quesion is looking for the patient to report any pain. So do you include everything? If I kicked a door and hurt my toe should I mention it here? It is seemingly irrelevant don't you think? But they did ask for "any" pain. Going with the kicking the door theory for a bit longer, do I rate it at 100 because it hurt like a bitch the moment I did it, or a lower score marking the general soreness an hour later? Do you see what I mean? Am I over thinking it?

But what about the questions asking for pain that is related to SpA? Surely they are easier to answer? Well, you might think so but you would be wrong. Sure, evaluating my hip is very easy. After all, there is nothing else wrong with my hip. If I am in pain, the arthritis is the cause. If I am not, then the arthritis is under control in those joins. Simple!

But what about my ankle?

My ankle has sustained 2 traumas and two surgeries all in the last 6 years. Putting aside arthritis for a moment, no ankle will be working as well as it once did under those conditions. How do I know which pain is from my arthritis condition and which pain is due to the fact that if you were to peel back the skin covering the lateral side of my ankle all you would see is spaghetti? I could give you a long list of different sensations I get regularly or irregulary in my ankle. Which of those are SpA and how the fuck am I supposed to know?

Since this question did not refer to SpA at all, I gave it a nice big score given that I'd spent part of yesterday with a killer headache.

Yet another blood test. I guess I'm up for these each visit. The joint assessment from flames revealed identical results to my baseline visit. Apparently, there is still swelling in my right elbow. I must remember to bring this up with The General next time I see him given the fact that I have never ever had any problems with either of my elbows. Oh wait. I smashed my left elbow joint when I was six when I fell of the monkey bars at primary cchool. It was pinned and plated. Somehow, it is still perfect. Aside from a scar, there is no other evidence that it ever occured. But the swelling is in the other elbow. Go figure!

This time, I manage to inject myself without flinching and for some reason, I didn't hurt nearly as much. I am told that next time, I get presents.

I just *had* to go for a walk

I simply had to go for a walk today because today marked the first day since the end of summer the mercury sailed past of 20 degrees. My skin, which had been separated from the sun's rays for so long that it had consulted a lawyer and commenced divorce proceedings, was singing in delight.

We started from my house at around 11:30am and headed to an area of Altona that we hadn't yet discovered and which contained no traces of plastics factories or petroleum processing plants. After around an hour and a half we headed back the way we came and got back in the door around 3:30pm.

My hip which had recovered from its small flare up by now held out nicely. My left ankle on the other hand, did not. There was no presence of any sharp knife-like pain like I used to get in the years leading up to my diagnoses. A dull ache started fairly early on the way home. By the time I got home it was sore. I would give it a pain score of 6/10. After having sat down for an hour the pain had increased to 7/10 and I limped to the fridge when ever I got up to get a drink or some other minor task.

It remained like this for the remainder of the evening so 30 minutes before bed, I popped a couple of Neurofin Plus which, as usual, did little for the pain but enough to provide me enough mental lubrication to get to sleep.

And, as usual, I woke up on Monday with the ankle returned to its swollen state I describe now as "normal" and relatively pain free.

Baseline (Week 0) - Let the trial begin

Sometime in the last week, I officially became medical research subject #1303.

The clinical study of which I am now wedded is studying the effects of adalimumab on people with undifferentiated or peripheral seronegative spondyloarthritis (SpA).

The article How Did I Get Here is the story of, well obviously, how I came to be in this position. Over here, are the Players. All the people who have been and, in some cases, continue to be part of this story are given a mini-bio right here. Finally, over here, is my explanation regarding why this blog exists.

We begin this blog, at Baseline. Another name for Baseline is Week Zero. In practical terms, it involves filling out 20 pages of surveys, blood tests and clinical assessments. In my trial, the medical alumni at K are studying arthritis sufferers, so in addition to weight, height, and other physical facts one would expect to part with, it also includes joint assessments.

My joint assessments involve poking and prodding into joints looking for signs of limited mobility the range of motion, pain and swelling. If you have read How Did I Get Here it would be no surprise to find swelling and pain in my left ankle. There was also swelling in my right elbow, something I didn't expect and have assumed it to be to do with the fact that two days prior I was pushing my 11 lbs bowling ball down a set of polished floorboards which is an activity I have not been in a position to do much of in the last couple of years.

The last thing to be done during my baseline visit, would be to take my first dose of Adalimumab. Easy enough one might think until you learn that Adalimumab is administered by way of a needle and it is up to you to learn the art of performing subcutaneous injections. We've all seen it being done to someone else but how many of us think we can learn to do it without being told a very important secret. The golden gift of the perfect words which must certainly exist and when these words fall upon our uninformed ears, their power and wisdom make us an instant craftsman.

Seriously, these words don't exist.

The instructions are crap. They are crap because you just have suck it up and have a go. In fact, if the instructions said 'Suck it up and have a go' I think I would have actually helped. So I sucked it up and had a go.

I failed the first attempt. I flinched right at the last second and by the time my hand pulled away, the needle was almost touching the skin. If it did I didn't feel it. On the second attempt I didn't flinch. The needle penetrated like it was supposed to and I plunged the contents into the tissue.

Adalimumab fact #1: Adalimumab has a filthy sting.

My CO would tell me that the sting is not caused by the needle, because the needle is very fine. It stings due to the preservative that is used to keep the drug protected from early expiration. Now I'm no genius, but surely they can use another preservative. Last time I checked, there were millions of preservatives the human race has managed to either find or synthesise. Furthermore, my exposure to them whilst in the process of eating a meal has yet to result in my tongue and my gums going through such trauma. I'm just sayin.