Is Remission Possible…..

…..and is it within my grasp?

A couple of weeks ago, I popped off to see my consultant rheumatologist.  It was my annual visit and I had a very interesting time.  I’ll tell you about that in a minute.

When I saw her at the end of 2011, I was four months into eating paleo, nearly at the end of installing a new kitchen, dropping weight, feeling great, gaining muscle, feeling strong and reducing the drugs.  When I explained what I was up to, instead of giving me the standard medic’s sceptical response, she was very happy for me to continue.  In fact, she arranged a few extra tests to make sure there was nothing else going on.

Her parting shot was, “Don’t lose any more weight!” I didn’t.

One of the extra tests was a coeliac screen.  There is clinical evidence linking rheumatoid arthritis with coeliac disease, which just shows that gut health plays a part in autoimmune conditions.  My coeliac screen was inconclusive, which was kind of annoying.

Anyway, I didn’t need to see her again for a year.  So throughout 2012, I continued to eat as well as my willpower would let me, started writing about it, didn’t take the drugs as often as I was supposed to and experimented with bringing some food groups back into my diet.

After much experimentation (some of which is documented in previous posts) I can now say with confidence that anything with a sniff of wheat brings my symptoms back and they come back very quickly.  Now, I know I’m not coeliac, but my gut really doesn’t like wheat and shit really does go down.  Here’s a good example.

Since Christmas and our magnificent paleo dinner, I have been feeling pretty groovy and quite awesome.  Last week, I was out for a lunchtime curry with colleagues and had some pakora and, yes, it was in batter.  A little rice (not too much) with my bhuna and by the time I got back to the office I was feeling sluggish, tired, my hands were a little sore and the pain in my right elbow was coming back.

That’s the power of food.  Amazing.  Since then, I have had a persistent and very annoying problem with the index finger on my right hand – for the last nine days its been swollen and mildly painful and it doesn’t appear to be going away any time soon!  I’m tracking all of this in my log.

Oh, my log, yes I’ll tell you all about that in a minute too!

So, back to food.  Along with wheat, I also know that dairy doesn’t agree with me – a little more difficult to put my finger precisely on what’s happening but I just can’t stomach it any more!  I was beginning to think that dairy was making my skin bad, but not now.

It’s sugar!

Jeez, stuff with a lot of sugar in it brings my psoriasis back with a vengeance!  I have some patches on my forehead, on the back of my head under the hairline, on my lower back and on the backs of my hands.  Sugary foods and sweets just make it flare like a beacon and, unfortunately, alcohol too – and it’s very unpleasant, itchy, sore, unsightly and, what’s more, my wife can always tell when I’ve been up to no good!

So, even after all this time, I still have this going on…..

BrainFight

I have been constantly battling with myself.  As they say, you only cheat yourself and it’s been a slow realisation that I just can’t have some types of food, not even just a little bit.

So, I’m being clean, cutting down on what I drink and staying away from the stuff that makes me unwell.

I am really out to prove a point because I am now completely off the drugs – officially!

This is what happened when I saw my consultant.  When I was called into her room, she was elsewhere so I saw her Senior Registrar.  He didn’t know my story so I had to summarise the events of the last 16 months in a couple of minutes.

Now, for someone who has a reputation for talking at length about just about anything, is left to the end of the meeting to give an update (so that everyone else around the table has a chance) and who is the butt of many a joke about brevity at work, home, everywhere else, this was no small feat.  My colleagues won’t believe that I actually managed to do it.

But I did.  I got quickly to the part about only taking the drugs every 6 or 7 weeks and I wanted to know what I should do now.

Incredulous, flummoxed, he made a noise like a horse snorting and said that it was very unusual for someone to come off strong anti-arthritis drugs so quickly, or to only take them at 6 week intervals and that he didn’t quite know what advice to give me.  He said, “In fact, I’ve never heard of anything like this.”  That disappointed me a little.

When you consider that there is a wealth of information and credible evidence kicking about the place, readily accessible to anyone who might be interested, you might think that the docs would have a look too.  I wonder how much doctors really are interested…..

…..when the drug companies are paying the bills.

Anyway, that’s a completely different tangent and I’m trying to be brief.  He went off, shaking his head, to speak to his boss.  They came back, asked a few more questions, listened, then asked the most important one.  “What’s your ultimate goal, Scott?”

Well, I hesitated.  This was the crucial question.  The one I’ve been asking myself for the last year and a half – almost.  Did I feel that, with little flare up after little flare up, I could really achieve my goal?  Was I prepared to put my mouth where my money was?  Could I maintain the willpower, stop fighting with my brain and actually stick to something?

My wife’s words echoed – look how far you’ve come!  She’s right . I got a little emotional and said, “I want to stop taking the drugs.”  My consultant said, “OK, go for it.”  But added, “Let’s see you in 3 months and assess how you’re doing.  My clinic is very full, but we’ll squeeze you in.”  I wanted to say, “Why is your clinic so full?  Your patients should be on a paleo diet.  You could save money, time, effort, etc!” but that’s a conversation for another time.

I couldn’t have said anything anyway because, for the second time, I was in tears in my consultant’s room.  This time, though, for a much better reason.

So, that’s that.  For the time being, I am drug free and feeling a little scared.  I do think I was using the drugs like a crutch – there if things weren’t going well, there if I just thought I should have them, when I felt guilty that I hadn’t taken them in a while.  I must say it feels a little weird.

But I have my log.  Yes, I can now tell you all about my log!

I thought I should have some evidence of how I feel physically so that, after 3 months is up, I can take it to my consultant and be able to have the above conversation!  I have a spreadsheet (no surprise there – I have a spreadsheet for most things) and I am recording, daily, how I feel in the morning, how things feel during the day and (really important) how I slept.

So far, I’ve had to record far too much in my log because of my dodgy index finger, which is annoying in so many ways!  But, it will give me a brief history of how it feels to be completely drug free, no matter what happens in the next 3 months.

Am I even more determined?  Damn right!

Brain vs Brawn image provided by Yau Hoong Tan and is on the Flikr photo feed at this address: http://www.flickr.com/photos/tangyauhoong/4474921735/

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