The Log Is The Blog 2

The Return of Humira

Well, I have had to take my meds.

A couple of months ago, I had a pretty rough time.  After the euphoria of seeing my consultant, playing mind games with her registrar and officially coming off my medication, I was feeling amazing, confident, bouncy, full of myself and ready for a drug free ‘rest of my life’.  The reality, however, is that I’m not cured.

Bugger!

Log2-1

My daily log tells the story.  From the start of February, things started to take a dive and I was feeling more unwell every day.

Unlike me, I started to worry.  I tried to be patient and give it another day, and another, and another.  But, it just wasn’t happening.

In the early hours of Thursday 14th February, after being unable to sleep, I hobbled out to the garage (where I keep the fridge for my drugs – there’s food in there too, I don’t just have a ‘drug fridge’) and injected.  This was a big thing for me.

I’ve said before that I’m lucky, in that Humira establishes itself readily, so I was quickly feeling better – as the following days in my log show.

Log2-2

I was, however, quite disheartened because I had been clean.

But, really thinking about it, while I had been very clean with the food I was eating, I hadn’t stopped drinking.  Well, I can’t resist a gin and tonic or six now and then!  Who can?  Well, I suppose lots of people can, but I do have a constant battle with my willpower – constant.

The news of my demise was greatly exaggerated – by me.  It did elicit some interesting opinions from my family, though.  My wife said, “Did you really think that you were cured?”

This took time to sink in.  My wife has been my greatest support.  She was the one who handed me the book ‘The Paleo Solution’ and said, “You’ll never read it”.  She has been hugely encouraging and is the steadying force when I’m feeling down or reaching for the bread.  She has stopped me from giving in lots of times.  She is a formidable woman. Intelligent, tenacious, splendid, sharp, clever, quick, funny, brilliant and gorgeous.  I am her biggest fan.

But, really.  Honesty at this level.  It took me by surprise.  And it made me think.  Did I REALLY think that I’d be cured?  To be honest, yes.

No.

Yes.

Truth is, I don’t know.  There was a small part of me really hoped that I’d be well and truly off the drugs.  I was disappointed.

Then, I was having a chat with my eldest daughter.  She said the same thing!  “Dad, did you really think that you’d be cured?”  She said this with a kind of ‘Dhuh, stoopid!’ look on her face.  She’s a teenager after all.

So, a bit of deja vu and a reality check from the women in my life.

In the space of a few days my family had brought me back to earth and made me wonder if I really would/could/should come off the medication.  It took me a week or two to get over this, which surprised me.  I’m pretty upbeat, positive and optimistic most of the time and this set me back.  I couldn’t get it off my mind.  This was not a comfortable space for me to be in.

It’s a big cliché but being positive is essential for life with a chronic condition – or even without one.  Life in general can be a bit shit.  I have often been in lots of pain or constant discomfort.  I’ve had painful operations and spent months recuperating.  I’ve had wound infections, been catheterised more than once, had a feckin’ big needle stuck in my groin to aspirate fluid from my hip and had all sorts of other tubes of varying sizes thrust into bits of me.

Everything I’ve been through has been an experience and I have tried to treat everything as just that – an experience.  I do think that attitude has a lot to do with wellbeing.

So, after my reality check my positivity has returned.  Hurrah!  Since taking my drugs at the beginning of February, I have felt the need to inject again – two weeks ago.  But, the difference is that I have accepted that I MAY, that’s MAY, have to have a helping hand now and then.

Log2-3

I’m not giving up.  I’ve gone ten and a half to eleven weeks between my last three injections and I’ve been feeling pretty good.

The experience leading up to the 29th April (my last injection) was nowhere near as severe as the build up to the 13th February, as you can see from this excerpt of my log.  The difference this time is I have only taken Humira – I’ve left the Methotrexate out of the equation for now, just to see what happens.

This is all still an experiment and I’m still learning what I can tolerate and what I can’t.  It’s all about the choices I make.  As my wife keeps saying, “Is having a drink now and then something you’re not prepared to give up?  You know it’s not Paleo.  You need to make a choice.”

She’s right of course.  Just like Neo in The Matrix Reloaded, it’s all about choice.

And making good ones.

I Could Eat A Horse!

And I have eaten horse.  Not because I have unwittingly bought it in a processed ready-meal, but because I chose to.

I was in France, I was 20, ready to try anything and I had horse filet, medium.  My memory is rather hazy (I can remember eating crocodile, emu and kangaroo in Australia rather more clearly) but I think horse was quite good.

Finding horse-meat in processed food in the UK should come as no surprise.  I am amazed by the reaction, to be honest.  The food industry is out of control, fuelled by greedy retailers looking for cheaper product and higher profits.

For me, trying to manage an autoimmune disease with diet, food has become a very important part of my life.  I place a very high value on good food made with good ingredients and I spend a little bit more time than I used to sourcing quality ingredients, meal planning, re-using left overs, recycling bones and pretty much squeezing every bit of goodness from the food we buy.

Breakfast

For example, here’s what I had for breakfast a couple of days ago.  These are pork meatballs, cold, left over from the night before, with a boiled egg and some of my gorgeous homemade mayonnaise.

A couple of years ago, they would have gone in the bin.  But, why throw away perfectly good food – and, what’s wrong with having something like this for breakfast – absolutely nothing!  We are conditioned by the clever and greedy people who call themselves the food industry to eat cereals and toast 1st thing in the morning.  Of course, that’s what Paleolithic man would be eating – Cheerios and bread?

Why?  Because we’re told it’s good for us.  But really, why?  Because it’s what we all start the day with along with a cup of tea – it’s the convention.  But really really, why?  Because it’s abundant and sustainable, that’s good isn’t it.  But really really really, why?  Because we tell you to and because it makes us money.

Who says that we have to conform to a convention?  A convention designed to make the food industry money?  I’ll tell you who, the bloomin’ food industry, that’s who!

It’s all about money.  Money and greed.  What the food industry is NOT about is delivering good, wholesome, nourishing, responsibly sourced food.  Our processed food is full of chemicals to make it taste better, to keep it on the shelf longer, loaded with salt, bulked up with sugar, ground up bones, eyeballs, testicles, glands, anuses, maybe even feces, dyed to make it look nice and shoved full of all manner of other detritus that would likely make us barf, if we knew about it.

You really have to wonder what goes into a really cheap ready-meal and the thing that we are slowly discovering is, actually, no-one does know.

System

Retailers, especially those in the UK, are maybe waking up to this.  They, along with manufacturers, have created a perverse system, fuelled by greed and it works a bit like this.

This constant pushing down of margins puts people out of business, makes people scared.  We’ve seen this recently with price-fixing of milk, where powerful retailers drove businesses to breaking point, just to make a bit of money.

The horse-meat saga is no different, with retailers and manufacturers creating a system where meat products move around the world, as people try to source it at the cheapest prices.  Sight of the supply chain is lost, no-one really knows where it comes from and no-one really cares.

As the system pushes further and further away from fully understanding where the process starts and what it looks like end to end, criminal activity can, and probably does, creep in and goes unnoticed.  Or, the system turns a blind eye to it because greedy people don’t really care about things like that.

I am reminded of a line from Aliens, when Ripley has found Carter Burke out to be a nasty, greedy piece of work, willing to sacrifice the lives of Ripley and Newt just to make a bit of money and she says (of the aliens who want to use them as hosts for alien babies), “I don’t know which species is worse.  You don’t see them fucking each other over for a Goddamned percentage”.

Too true.  Humans will be the death of the human race.

This system has become too complicated and corrupt.  The supply chain isn’t a chain any more, it’s a web and no-one has a clue what’s going on.  I wouldn’t be surprised if there was cat, dog, rat and other unexpected things in the food some of us choose to buy.

There have been many studies warning that the human race is going to grow so big that, within 60 years, we won’t be able to produce enough food to feed the planet.  We’ll end up having to rethink what we eat.  Insects will become a primary source of protein.  I suspect we’re already there, we just don’t know it!

I’m a Systems Thinker.  If you’re not sure what that is look up Vanguard Consulting and check out some of the brilliant work these people do.  One of my favourite people is the head of this organisation, a man called John Seddon.

I learned Systems Thinking from him and I had the privilege of working with a few of his people about 10 years ago.  The experience changed my life, my perspective and the track of my career.  Part of my job is process consultancy and they key thing to understand in any system or process is what happens end to end.

John says, “It’s the system, stupid!” meaning that when strange behaviours happen, it’s the system that the people work within that drives it.  As a systems thinker, none of the horse-meat saga surprises me.  The behaviour of the people supplying each part of the process, trying to make a bit of money and constantly being squeezed is driven by fear, greed, constant pressure to deliver for less – in other words, the system created by the people at the head.

And at the head are the retailers.  People will try to blame all the other parts of the system but it’s those who have made the system that carry the blame.  They have lost lost sight of what’s important, put money before everything else, turned a blind eye and, ultimately, stopped caring for their customers – if they ever did in the first place.

This is one very good reason why I don’t buy processed food and I source my meat from local suppliers.  I understand my supply chain very well.  I buy from a butcher. The butcher is a partner in a farm.  The beef, pork, chicken comes from the farm, via an abattoir to the butcher.  Simple.  The beef is grass-fed, the pork is pastured and the chicken properly free range – and the difference in taste is unbelievable!

ChickensTake today (Sunday 3rd March) I’m cooking two chickens.  Free range, not that expensive – in fact, Tesco and Sainsbury are more pricey – and they are just different to anything else I’ve cooked.

When you pick them up, they’re soft, pliable, they flop in your hands, you can tell they’re more tender just by lifting them up.  I was quite excited explaining this to my wife.

They are beautiful things.  When I think about the last chicken we bought from a well-known retail giant, it was solid, heavy, probably full of water, likely finished on a grain diet to make it fat and just not that nice.

The taste is different too.  I have NEVER tasted anything like the chickens we buy now and my wife, who is the resident ‘chicken-picker-downer’ and really didn’t like handling the stuff, loves carving them and stripping the carcass once we’ve finished eating – she says the meat is like butter, beautiful, tender and juicy.

But that’s not the end of the chicken – no.  We make it last.  We eat one with roasted vegetables, then we have lots of meat left over.

Chicken

This will probably make two more meals, likely a curry and maybe something else, if we can keep our hands off – it’s just so lovely!

I’ll use some for the girls’ lunches and it’ll provide snacks if we’re feeling peckish.

Then there are the bones.  We waste nothing at all and we make a big batch of stock every week.

Stock

I can use a lot of stock (or broth) in a week because I’m always cooking casseroles, curries, soups and the stock we make is really tasty.  In fact, it’s so tasty I’ve started to drink it.

Really, drinking stock isn’t as mental as you think. I remember my Mum giving me an Oxo cube dissolved in boiling water as a wee boy – this is no different, just way tastier!

There’s a lot to be said for drinking bone broth and I have been reading this courtesy of my neighbour, who is also paleo, a systems thinker and a big fan of John Seddon – we’re always swapping notes!

ChickenFatThen there’s all the lovely juice that comes from a chicken.  I cool it down, skim off the fat and freeze the jelly to make gravy.

Our roasted veg is always done in the fat from the previous week’s chicken.  It makes the veg taste amazing!

You might think that all of this takes time. it’s too difficult, we all have busy lives, blah de blah!  No, it’s not difficult or time-consuming.

It’s cost-effective and it makes our food go further.  We can eek out 3 great family meals from two chickens, snacks and lunches for the kids, stock for soups, casseroles and curries, lovely light and pure fat for roasting veg and the base for gravy.  My family has never eaten so well or had such tasty food.

The key thing is, know what you’re buying.  Understand where it comes from, support your butcher, have a chat with him, find out about his supply chain, buy local, use it well.

Above all, though, just enjoy some really lovely grub!

Oh, and by the way, horse-meat is just meat.  The beef market is so expensive for manufacturers that, of course, people are going to look for other sources to bulk out their supplies and make some money.  Why does this surprise anyone?  It might actually be good for you, so say the BBC!

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90% of heart bypass patients……

…… revert back to their old ways within 2 years.

That was the interesting, if alarming, statistic I learned recently.  It’s been an interesting time all round since I last wrote.  Until this morning, my health had been pretty stable, I’ve been feeling pretty good, my knees, feet and elbows were all excellent and I was walking with confidence!  A result of my medication?  Maybe, but the drug will have left my system by now as it has quite a short half life, so I was feeling pretty cool.

The band had a gig – another wedding.  Here’s me waiting to rock the party.

It was a strange set up.  Usually, we try to be in when the room is being prepared, get the gear ready, check the sound so we don’t have to interrupt the proceedings by turning up with a van full of boxes!

This time, it was quite a small room and the wedding party were using the whole space.  We had a 45 minute window to get in and ready to rock while the room was being prepared for the evening celebrations.

So, we set up as much as we could under a gazebo in the car park.  It was dark, cold, damp and not very pleasant.  By the time we got inside, my hands were like ice and we were all a bit grumpy.  Especially my bass player – a wee hug, though, and he was OK.

Anyway, all that aside, we were up and running almost within the time, it was another fab gig and loads of fun, as usual.  My hands were still a bit dodgy but everything was working pretty well.  We kept the dance floor filled and our clients were very happy.

Then, at the end of last week, I was at a seminar/forum/event thingy with the ‘process folk’ from across my company.  I work in Business Change and my employers are very keen to build a community of connected change professionals in the organisation.

OK, now, before you start yawning, I’d just like to say that I think it’s a good thing and it works.  My colleagues work all across the company and you can go for months without seeing people in your team.  So, every three months, we get to see each other ‘en masse’ at a forum.  I like these things, I’ve presented some of my work at one, it’s good.  So there!

This time, we had a couple of guest speakers and the guy who had my attention (totally) was Craig Smith from Flint Consulting.  Now, this wasn’t just because he had a really funky presentation (I do want some of that, though, I do!) but because he was a very engaging speaker too.

He started his talk with the above statistic and related it to how a lot of change programmes in companies fail.  Due to the fact that people go back to their old ways, the stuff that’s comfortable, easy, the path of least resistence, etc, etc.  I have experienced this kind of thing in my workplace first hand and I couldn’t help relating it to what I’m trying to do right now.

My wife said that I’m trying to undo 46 years of habit.  She’s right and I suppose that’s what it must also be like for heart patients.  Now, you would think that, faced with death, people with a dodgy heart would take note and put being alive before anything else.  It just goes to show how complacent we can be and how comfortable old habits are, even if the risks are great.

If I was complacent, my path of least resistence would be to start injecting my meds again, start eating rubbish again, start not getting better again and be quite happy to pass this off with a, “Well, it would never have worked anyway” or a, “All these bad things’ll never happen to me” kind of throw away remark.  So, Craig’s talk struck a chord with me on a personal level.

To succeed, I have to be stubborn, stoic, relentless, learn from my failures, drop my complacency and never give up – just how you would lead an organisation into making a change for the better.

For example, this morning (Wednesday 21st November) I woke up with a very painful swelling!  Oooh er, missus!  Not what you might be thinking, my right wrist had swollen up overnight.  This does happen, although, it hasn’t for ages.  To be honest, my wrist had been grumbling for a couple of days, but this morning was dreadful.  I couldn’t move my wrist or my hand.

Here it is as of midnight, 21/11/12.  Compared to my left side, you can see that the right wrist is still swollen (although eased off enough to allow me to type) a bit red and it has an arthritic ‘heat’ about it.  Anyone who suffers with rheumatoid will tell you that when it’s active, joints can feel like they’re burning.  I can move my fingers now, although they’re pretty crunchy!

Anyway, back to earlier today.  I had to delay going into work because I couldn’t do anything.  Shaving was almost impossible, brushing my teeth was almost impossible, putting my cufflinks in was almost impossible, shoe laces – bloody hell, they were a nightmare and putting on a tie, that was COMPLETELY IMPOSSIBLE!  Today was the first day I’d gone to work without a tie.

Now, I could’ve jumped the gun, thought that the diet isn’t working well enough and reached for the syringe.  I nearly did.  BUT, that would be allowing complacency to rule my head and I would be merrily careering down the road to failure.

I think I’m better than that – I think we all are.  I’m not completely cured, but I have come a long way so why start doubting now?  I could easily go backwards, put back the weight that I’ve lost and resign myself to injecting medication every week and maybe not feel so good while posing a risk to me and costing the NHS a small fortune.  I don’t think I should settle for that and I don’t think anyone else should either.

That’s why I am happy to tell anyone with anything autoimmune to try changing their diet before doing anything else – and be stubborn with yourself because you owe it to yourself!

So, on that note, I am taking my diet a step further by following an Autoimmume Protocol for the next 30 days.  Really, it’s just the diet I follow just now but cutting out tomatos, eggs (both of which have become staples in my diet) bell peppers and spices.  All of these things have been shown to affect people with autoimmune problems.  It should be interesting.

I’ll leave you with a quote from Thomas Edison, which I found quite interesting.  He said, “The doctor of the future will give no medicine, but will interest his patients in the care of the human frame, in a proper diet, and in the cause and prevention of disease.”

Hmmm, haven’t had that experience yet!

This Week, I Have Been Mostly Wearing……..

……..a grumpy face.

I have been particularly grumpy, actually.  Annoyingly, people have noticed and it’s not good when people start pointing this stuff out to you.  Now, I could put this down to my age.  I’m 46, rushing headlong into the long dark tea-time of middle age, but happy-go-lucky with it and not usually a grumpy old bastard!

Well, I have been this week.  My wife, my kids, my workmates have all had to put up with “Scott, the Grump Who Stole The Mood.”

It’s not been a great week.  After feeling quite pleased with myself in my last update, things just didn’t get back to normal.  I was waiting for my hands to recover and they didn’t.  In fact, everything just went a bit mental, sprinted quickly downhill and I really felt like a creaky old arthritic.

It’s very difficult to put into words what being a creaky old arthritic feels like.  The only way I can describe it is like being a really old car, that someone does their best to take care of but it still doesn’t perform quite in the way you expect, it limps along and you never quite know when it’ll break down – and when it does, it always gets going again but it’s just a bit ropy.  Like a bad Top Gear challenge.

Anyway, my creaky old arthriticness left me with shock, upset, disbelief, upset, anger, upset, tears, introspection, upset, swearing – oh, the swearing!  Now, I know what you’re saying.  This is all being a bit melodramatic and one should really get a grip of oneself.

Maybe you’re right.  I was, however, reminded of the dreadful flare up I had a few years ago that started with sore feet (which I ignored).  I put the feet down to lack of sleep, a bit of stress and worry associated with having two little 34 week premature babies in hospital, trying to see as much of them as I could and still do my job (saving my paternity leave for them coming home, see).

Last week, I had sore feet.  Also, my fingers weren’t settling, my right wrist was immobile, washing my hair in the shower was suddenly the most difficult and painful thing to do (not to mention towelling – I would have killed for a man-sized tumble dryer) and my knees were behaving like the unruly 7-year-old girls my tiny babies have turned into.  And my knees – jeez my knees!

Knees.  They’re funny things.  The most awkward of human joints.  Not so much a joint as a very ill-conceived mashing of unmatched bone ends and Forth Road Bridge suspension.  Doomed to failure!

When my arthritis has been bad, I’ve been able to feel the ends of my bones, especially the tops of my tibiae – it’s a particular pain that’s somewhere between an itch and being stuck with a needle.  I suddenly had that pain again and it began to worry me a bit.

Time to take action and I reached for the medication.  I had to.  I honestly felt like I had failed and last Sunday was a rotten day – in my head anyway!  By the end of the day, the drug was kicking in and I was beginning to feel much better.  I’m lucky, Adilamumab works so well that I can go for ages without it and it’ll re-establish within hours.

This doesn’t, however, make me feel better emotionally.  I haven’t been as clean as I could or should have been.  I have given in to temptation in the last few weeks and paid for it.  Maybe, I’ve reached the limit of what I’m able to do without the drugs?

My wife, who is my greatest source of encouragement and support, put it very well.  She’s pretty clever, my missus.  “You’re trying to undo 46 years of habit, Scott,” she said.  “Look at what you’ve achieved?  In the last 14 months you’ve gone from being on weekly injections and not feeling great to maybe taking them once every 6 or 7 weeks and feeling brilliant!”

She’s right and I think I’m probably being hard on myself.  She’s right about the habit thing too.  You know, I LIKE bread, I LOVE naan bread with a curry, I ADORE cakes, I’d KILL for a stodgy pudding with whipped cream and chocolate sprinkles.  Custard, ice cream, crisps, sweets, loads of beer and Pickled Onion Monster Munch!

I am finding this quite a challenge and it’s a battle with myself and myself only.  Eating Paleo is easy, having the will to put all the other crap aside is the difficult bit.  I’ve always been impetuous, quick out of the blocks to try anything, do daft stuff and I’ve never thought of myself as having much in the way of willpower.  I like that side of my character, though, it’s who I am.  In the last few days, I have been questioning whether I am capable of sticking to what I am trying to do.

Maybe it is melodrama and I should just get a grip, because I know what it’s feels like to feel great and this is important.  This is about being well, feeling great, making the rest of my life good instead of descending into ever more ill health.  I feel great when I eat clean and I have to hang on to that.

Best get on with it then!

Being Paleo on Holiday…….

…..is all about making choices, some better than others!

Now, I don’t want anyone to feel sorry for me, because I’ve been on holiday for a week in the sun, but during that time I’ve been trying to dodge the various ways wheat has been presented to me.  I haven’t always succeeded, I’ve been a bit stupid and I’ve suffered the consequences.

We love going to Mallorca in the school October break.  The big draws for me and my wife are not having to go to work (yeah, really), clean, organise the children’s social lives and cook.  For the kids, it’s the sun, the beach, swimming in the sea, ice cream and going to restaurants (a big treat).  Eating out is one of life’s greatest pleasures and the various restaurants in Puerto de Pollenca are fabulous.  As someone trying to reduce or remove his symptoms of rheumatoid arthritis with diet, I can avoid dairy easily.  Trying not to have wheat, on the other hand, has been a bit more difficult than I thought because it’s everywhere!

I’m writing this on the flight home.  At the moment, I am nursing a swollen index finger on my right hand, a sore right wrist, the bursa on my left wrist is a bit painful, I have swollen and sore feet, a painful right ankle and my right elbow (the barometer) is playing up.

Sounds like I’ve had a great holiday, eh?  Well, I have.  I’ve learned a few things as well, which is excellent!

I’m also playing at a party tonight.  We have a dash up the A1 from Newcastle, drop the wife and kids, then it’s off to the gig.  My band mates have come to my rescue (thank you Marky Mark) and have all of my gear, so I just have to pitch up.  With the state of my joints right now, tonight should be interesting and I’m a little worried!

But I’ve been here before.  I had a vicious flare up 7 years ago when I stopped responding to treatment and spent 2 years in and out of consulting rooms and trying different drugs to find something that worked.  I was a difficult case, resistant to some of the commonly used drugs.  I lost weight, I found walking difficult, I had constant, severe pain in most of my joints, I had trouble sleeping, my family, friends and work colleagues all looked at me with worried expressions as they could see I was in trouble.

I’m a drummer in a band playing at people’s parties – important events.  There’s a code, you don’t let people down.  It’s the ‘show must go on’ thing.  I continued to play throughout this flare up, only having to cancel one gig and only then because I was an inpatient receiving some much-needed bed rest.  I found drumming quite liberating, but I was exhausted after every gig and completely unable to tear down my gear.  My band mates, again, came to my rescue.

My consultants (I had 2 by this point) eventually found a combination of three drugs that worked a treat, but they gave me crippling indigestion so that was just no good.  Methotrexate was next, worked a bit but worked better when delivered by subcutaneous injection.  Anti TNF drugs came next.  Etanercept didn’t work but Adilamumab (Humira) did.  Within 4 hours of my first injection, I felt a noticeable benefit.

So that was me.  Self medicating with Methotrexate and Humira injections every month.  Over the course of the next 12 months, the dose of Methotrexate increased as did the frequency of both drugs, to once a week.  There they stayed until September 2011, when I started to think differently about what I was eating and I have been experimenting since.

So, what of this recent week of experimenting with food?

I love fish.  Eating in a place by the sea means that there’s always fresh fish on the menu.  But it’s not as simple as just grilling a fish, as we will find out.  Here are my good choices…

…and here are my bad choices…

…and here are the consequences…

 

As well as the above, I have sore feet, which is really poor show.  I hate having sore feet.  Standing and walking on sore feet is just crap, as anyone with sore feet will tell you.

Why?  Wheat is the thing that kills me and my feet.  I can stand (no pun intended) a little bit of dairy, but not much.  Wheat, on the other hand, is little more than poison.  Harsh, you think?  Wheat is the core of our system of nutrition, it is grown all over the world, it makes ‘our daily bread,’ it’s a major component of processed food and it’s in more things than you realise.  It is, quite literally, everywhere.

Wheat makes us fat, it contributes to the growth in obesity and diabetes, it inflames our guts, it hurts our organs, it makes approximately 40% of the human race ill in some way.  Yet we are encouraged to eat, eat and eat more whole grains!  We are killing ourselves slowly and, in people like me who have autoimmune problems, it is the thing that makes the difference between being well and being very ill.

Now, you probably think I’m completely mental.  I’m currently reading a very interesting book about the effects of wheat.  And, I have been experimenting with food for over a year now.  I know what makes my symptoms flare and it’s all things wheat.

Well, I’m off to be clean for a month.  I’m not going to spend that time in a bath – I’m going to do what I should have done this last week, make some good choices, which will cleanse my gut and make me well again!  I’ll keep you up to date with where these choices lead.

The wheat story hasn’t gone away, though, it’ll run and run.

Got To Get Off The Meth!

My wife sent me this link recently.

http://robbwolf.com/2012/04/23/battling-rheumatoid-arthritis-paleo-diet/

A very interesting read from someone who is using paleo to deal with arthritis. Interesting for me as the story of her journey (there you go, I’ve used that word) was similar to mine. I recognised some of the things I’ve been through and I like Robb Wolf – it was his book that started me thinking differently about what I eat. Try it – The Paleo Solution. It has changed my life!

What pissed me off a wee bit was the way she made Methotrexate look really bad, dangerous, toxic, scary and generally so awful that it’ll kill you! This is all a bit of scare mongering, really, and I don’t think it’s all that clever or creative to just copy the information card that comes with the stuff. Have some bloomin’ imagination!

Most people on Methotrexate don’t have any issues at all – like me. Patients are monitored so closely that, if anyone does have a reaction, they’re off it before you can say “cancer inducing Anti-TNF therapy is much worse.”

I’m on both. I am supposed to give myself an injection of 25mg Methotrexate and one of 40mg Adilamumab (Anti-TNF bad stuff) every week. The latter is the drug I really want to stop taking. Why? Anti-TNF drugs are brilliant, they work and Adilamumab really works for me BUT they’re new, they’ve not been around long enough for anyone to really understand the effects of long term use. There have been some reports of melanoma in patients taking Anti-TNF. That’s why. My surgeon, the guy that looks after my dodgy hip, calls it poison and I am inclined to agree with him.

Now, I said earlier that I’m supposed to be taking my drugs once a week. Well, I have lapsed a bit. Since the end of April 2012, I’ve injected four times. Pretty much once every five weeks. The last one was a disaster – I’ll tell you why in a minute!

My diet is working. There is no doubt. It’s been a year since I started. I’ve not always been strict with myself and I have suffered for those times. I’ve lost weight, gained muscle, inflammation is slowly disappearing, I feel strong, I have stamina. I feel much better than I have done in years. I don’t suffer from my annual post winter chest infection and the amount of time I spend away from work due to health problems has fallen sharply.

So, what was the disaster? I had gone for 6 weeks without an injection. Some days my feet were sore so I’d say, “I’ll inject this weekend.” Then my feet would get better and I wouldn’t. Then my fingers would feel bad for a couple of days and I’d say, “I’ll inject this weekend.” Then my fingers would get better and I wouldn’t do it.

My band were playing a gig two weekends ago. It was one of those gigs where we wanted to do well, put on a good show, people may be there who want to book us again. I had sore wrists and my feet were a bit painful (nothing too bad) and I hadn’t been that strict with my diet. Dick!

So, 2 days before the gig I took my injections. Big mistake. I should have just let my body recover naturally as it had done countless times before. What happened was a horrible reaction to the poison (my surgeon would be proud) that I was pumping into myself. I had stomach cramps, cold sweats and only just made it through the gig. I had a day off work on the Monday because I felt so bad.

Oh, the irony! No drugs, feel great! Have drugs, feel like pish! I think my system is so clean that any form of artificial anything gives me an extreme reaction. Now, I’ll probably have to test this out again soon – not looking forward to that but, in the interests of science, “I’ll roll up my sleeve” (Renton, Trainspotting).

So, is my wife right? Do I need to “get off the meth?” Oh yes indeed and, more so, off the Anti-TNF and I’d like to have that done by the end of the year.

This stuff is poison after all.