Pernicious Anaemia (part 1 of…who knows!)

I have recently been diagnosed with Pernicious Anaemia.  When I say recent ,  I mean 2 weeks ago.  It still feels strange to say it.  Feels weird to recognise that I have a condition that will never go away and requires lifelong treatment.  I never imagined such a thing affecting me and, as many others admit when diagnosed with anything serious…I thought things like this happened to other people. 

So as it’s a fairly recent diagnosis I’ve had my head buried in books and my fingers flying over the keyboard doing extensive and in-depth research.  Some pages I don’t want to read…I come back to them later when I’m feeling a bit more positive.  I think I’m a bit sick of reading now. I’m not finding what I’m looking for. There are no articles or papers on the subject that say ‘but don’t worry, you’ll be fine’.  Thats what I want to hear.  Even though I don’t believe it….yet.

I’m finding the nomenclature a difficult one to explain to friends and family.  It seems when people hear the word ‘anaemia‘ they throw random (slightly ignorant to be fair, but through no fault of theirs!) comments at me like, ‘oh so you just need iron tablets, you’ll be right as rain’ or ‘you want to get some steak/spinach/raw liver (!!) down you, that’ll sort it’. 

The first thing I try to explain when telling someone what I’m dealing with here is that Pernicious Anaemia (PA) is NOT the same thing as iron-deficiency anaemia.  Its entirely different in fact.  PA occurs not through lack of iron or haemoglobin, but as a result of Vitamin B12 deficiency.   

See? It's large and complex!

This is no ordinary vitamin. It’s the largest and most complex of all the B vitamins and is absolutely essential for life.  It is essential for the production of red blood cells, DNA synthesis and the functioning of the brain and nervous system.  It’s actually necessary for the metabolism of EVERY cell in the body.  Without it you die, so, lucky I didn’t find this out some 50+ years ago before some clever people figured out how to inject the stuff straight into your system!  So why can’t I just eat a healthy diet of vitamin B12-rich foods, or take supplements? 

There are different ways to develop PA.  One route is by a B12 deficient diet.  So…great!  Eat as much meat, eggs, dairy – great dietary sources of B12, as you can get your hands on.  Or get down to the local health food store and buy bucketloads of supplements to throw down your neck.  It’s fine, you can’t possibly overdose on the stuff, any excess is simply excreted in the normal way.  So thats that sorted. What about the other kind?  The kind I’ve been diagnosed with.

The ‘other’ kind is a bit more complicated.  The other kind is B12 deficiency that, no matter how much meat, eggs and dairy I eat and no matter how many supplements I knock back, cannot be cured this way.  The reason being that my body will not accept B12 via the normal route.   As I mentioned earlier B12 is a large vitamin and in order to be absorbed into the body it needs to form a complex with a substance called Intrinsic Factor.  This is secreted by the Gastric Parietal Cells (GPC’s) lining the gut, under normal circumstances.  With the kind of PA I have however, the GPC’s are unable to secrete the Intrinsic Factor as they are under attack from my own antibodies.  My PA is an autoimmune disease.  I already suffer from another autoimmune condition which is vitiligo.  This is where my antibodies attack the cells which provide melanin in my skin resulting in white patches that will never colour by way of a suntan.  However this doesn’t affect my health – it just requires a very high sun block factor when out in the sun!

My antibodies attacking my GPC‘s though?  Thats a problem.  The term ‘pernicious‘ actually means ‘fatal’ or ‘deadly’ for a reason.  It used to be!  Luckily, treatment is as simple as injecting B12 directly into a muscle (e.g. upper arm, thigh) a couple of times a week or a couple of months until levels are acceptable and then maintaining these levels with 3 monthly top-ups.  Thats the good news…

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Boring bedrest!

This is the only kind of bed I want to do any ‘resting’ in! Bloody bedrest…

…..what is that anyway? Let me tell you there is nothing, actually nothing about forcing me to take off work and lie in a bed for 2 weeks that could in any way, be described as ‘restful’!

It’s 9am (ish) on Day One of ‘bedrest’ and already I’m drumming my fingers on my laptop waiting for something interesting to happen so I can write about it and stop watching an endless stream of dvd’s I’ve already seen or writing lists of all the hundreds of things I’m going to supposedly ‘catch up’ on over this restful period!  It’s a very good thing I  don’t live with a partner during times like these as I would undoubtedly leave  them also needing time off for R&R after about three days with me climbing the walls! 

I have actually already been up this morning. Made a cuppa, toasted a couple of crumpets and brought them back to bed. I suppose I could venture downstairs and find out what Phil and Holly are discussing today. Or watch some posh people with more money than they know what to do with, pop a hard hat on and pretend they’re getting really hands on with building their own home because they’ve laid a brick! 

Of course, my guitar is sitting downstairs too, waiting to be played. Then there’s laundry, bills to sort out, cleaning to do….also going to pop into work and make sure everythings ok.  With any luck all that should tire me out and have me ready to get into bed for some actual rest!

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Next!

Finally finished my Mad Men marathon.  I must admit I was a little apprehensive when I double-clicked on S04E13 knowing that there were no more waiting to be transferred from my dropbox folder. It was a hectic couple of days, what with trying to fit in work (the kind I get paid for!), bathing, eating etc. around finishing Season 4.  I powered through however and now just have to sit twiddling my thumbs until summer (ish) and new seasons of True BloodSons of Anarchy and hopefully…Mad Men.   Or do I??

Of course not! There’s  a whole new w o r l d  of shows waiting for me provided by my HBO dealer who keeps feeding my FX habit….PLUS some other series that I found on Sky Atlantic – a channel I’ve only just, accidentally, noticed to be honest. They’re showing Big Love, another HBO offering about a mormon family headed up by Bill Henrickson,  his three wives and nine (combined) children, living in Utah, U.S. (where else?).  I’ve only seen the first episode up to now and it was pretty much an introduction to the family, ascertaining the individual members roles and basically introducing anyone who was unsure about it, to an initial overview of what polygamy involves…as accurately as can be done in a fictional tv drama created to entertain!  Drawn in enough to make me want more, I think it’ll take a couple of episodes to get into this one. Unlike the next little gem….Treme (HBO).

I was actually on my way to bed (after a hard nights MM drama)when I heard the music of the opening credits. Curious, I came through from the kitchen, plonked myself down on the beanbag (yes I know – ‘grow up’ right?) and then couldn’t actually drag myself away. The music may be what did it originally but the storyline had me hooked surprisingly fast, as well as the great cast.  A group of actors about whom I found myself saying (out loud mostly….to myself) ‘oh my god I love him/her’ but couldn’t name them. Apart from John Goodman of course, I knew his!

My inability to name them though was no reflection on their talent. It was simply because I’ve seen them in small roles, which have obviously had an impact, but also because……I’m sure there was another reason….oh – because I have a terrible memory.

Treme (pronounced tray-may – French accent entirely optional) is set in New Orleans 3 months after Hurricane Katrina.  It follows ordinary people living in Treme setting about putting their lives back in order after the devastation of the storm but also explores, from a political angle, the real-life issues and controversies surrounding the aftermath. It is not however, a documentary remember! It’s fictional drama based on true events. It is effective and emotive though. Not that any of us who have never experienced such a tragedy could fully understand…Treme certainly encouraged me at least, to empathise and be reminded of how fragile we are at the same time as being able to show amazing strength and an ability to pull together as communities when it hits the fan.

So there it is. Thats why I’m watching it anyway!

Now, as in right this minute,  I’ve gone and started watching The Closer. A little different to the other shows…I don’t usually go in for cop shows, but I really really like Kyra Sedgewick, so I’m giving it a go. Couple of episodes in and all is going well. More about that some other time though…

By the way…you can ‘Mad Men’ yourself here – if you’ve got 5 minutes to kill and want to create a Mad Men inspired avatar!

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Landing in London

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I  l o v e  Landing in London – actually doing it as well as the 3 Doors Down track! (see the live acoustic here – its truly a beautiful song by one of my all-time favourite bands)

Coming down from a small village in West Yorkshire it’s the only place I take so many trains to get around.  The last time I came down, rushing straight from work as usual and less usually, bookless I realised how grateful I am for the lovely culture of newspaper recycling.  I love that you can get on any train at any time and generally find a discarded newspaper on the seat (assuming it’s not rush hour and you can actually find a seat!).  It ‘s a random process….could be any paper, one I don’t normally read, or a just a section…arts, sport, finance…  This for me is the best bit. No, not necessarily the finance section (!) but the fact that you never know what you’re going to get.  I like to watch people get off the train leaving behind their paper and the next person to sit in their seat immediately pick it up to read. Maybe discovering the same piece of news, maybe spotting something the last person missed.

It’s nice to know though, that throughout the day and night the chances are that every single word of that paper will have been read at some point. Not a syllable wasted of each writers thoughts and efforts to word them ‘just so’.  Plus, if you’re lucky there may even be a blank crossword puzzle to complete!

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Mad Me…

…n seem to be the only thing  getting me through the insomnia lately. Although it’s possible they’re actually contributing to it too!  Unfortunately the writers will insist on doing the whole cliff-hanging business at the end of e v e r y episode! How am I supposed to just decide it’s time to switch off…this requires willpower I simply don’t have after a long day at work.

Not complaining really though.  It’s how I love to watch all my recently discovered tv series courtesy of  HBO – one after the other. No pauses, no waiting a whole week to find out what happens next. Just save them all up and dive in. Lose myself in another world for a few hours…or even a couple of days on a free weekend! Purely indulgent…and why not?

So, having spent November in Bon Temps, Louisiana and Christmas in Charming, Northern California…I’m currently killing time on Madison Avenue, NYC.  Oh, and it’s the 60’s.

Four episodes into Season 3, I’m very happy to have discovered that even when I’m done with Season 4, there IS a fifth due to air this year! Phew!

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true blood

True Blood 4!

I don’t know how long it’s been common knowledge, or how it’s managed to pass me by till just now, but True Blood Season 4 is due to air in the U.S. on the 12th JUNE!  Cannot wait! Although I do realize I’ll have to of course.

Since being introduced to the delights of TB I have actually created a dedicated little corner in my mind solely for the inhabitation of vampires, werewolves, shape-shifters and the like.  At the end of my first episode I was politely asked if I wanted to watch something else or another TB…obviously I said another TB and continued to respond the exact same way for another 24 episodes! Stopping only for refills of Jack Daniels and coke (tequila and coke when that ran out….surprisingly good, will expand another time!) and to answer the door to the delivery guy bringing much needed Chinese food.

If you haven’t seen it, drop everything…NOW….and get on it! You won’t regret it. If you do, well you obviously weren’t paying attention!

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ok so I’m not dying…yet!

Blood results could have been worse I suppose. I have to go back into the surgery and give them some more, because apparently 5 test tubes full wasn’t enough! It looks like a Vitamin B-12 deficiency.  Which is ironic since one of my dissertations at uni was on Pernicious Anaemia so I have books galore on the subject.  What annoys me is that I know so much about it yet couldn’t self-diagnose based on the giveaway symptoms!  I self-diagnose  e v e r y s i n g l e d a y for goodness sake. With Google’s help of course.  We all do!

So as well as the regular injections of B12, I’m sure I read something about fresh cream chocolate eclairs being an e s s e n t i a l part of the dietary requirements…will post the link to that as soon as I find it again!!

This may of course have genetic/hereditary implications so I do have to inform family members.  However, I think it’s probably best I do some ‘proper’ research before sending anyone into a panic!

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