A Quick Catch-Up

So where was I, before I was interrupted?

I feel I ought to write something in defence of the net; it's actually a good place.  Yes, I may have had unwanted contact from one individual and it's possible for a person's past to rear up its ugly head sometimes, but the web has also been responsible for me reconnecting with someone with whom I was very good friends, when we met at Royal Holloway during my first M.A back in 2001.  We've shared a couple of very long phone conversations since this initial discovery of me, by the lady in question, and it's amazing to feel as if the friendship is just where it was all those years ago!  Hopefully we will have the opportunity to actually see each other in person - and yes, if you are reading this, it is a plug from me to you to get on and apply to do that PhD; I want to proof-read that 100, 000 word book about Isabella!  I'm on the case of several friends about this particular issue, so all of you who are in that boat there is one thing I have to say - hop to it!

Aside from that, in the weird world of Eve and medication, things are afoot.  After another consultation with another doctor about blood sugar levels, it seems apparent I can not tolerate the Diabetes tablets, so we're looking at Insulin again, but not all the time.  I shall be on a fairly rigorous testing program and only using the drug when I need to, which may be three times in one day and then not for two.   This is, of course, assuming that I don't have some crashing reaction to it, as I did with Glipizide.  Ending up in A&E, unable to get my blood sugar above 2.6 was not a lot of fun. 

So, why didn't the doctors get my drug right?  Well, this is what my Paleo Pal will recognise as the 'Factor of Eve'.  I've used that phrase a few times too often in front of her!  And by this I mean two things.  Firstly, most doctors are completely in the dark when it comes to transplantation and the nitty gritty of medication requirements.  Secondly, my body doesn't react to any medication, the way it is supposed to react.  No, they don't know why. Harefield and I have been making this up as we go along, for the last 26 ½ years, based on what they know, compared with my observations about my own body.  For example, I am on one drug called Erythropoietin.  It seems that most people are on two doses a week, but that was too much for me, so with a bit of mathematical jigging of numbers from me at home and agreement from the hospital, I inject 700u every 5 days.  I've been counting days like this since I was 15.  I am the only patient I know who has this regime, but at least the hospital was flexible enough to allow me to do this!

However, back to the blood sugar.  Two things came into play regarding my departure to A&E hypoing on a drug that should not have caused hypos: the reaction time of the Glipizide should have been two hours and it extended to about 24 hours in me.  Then, the usual response to a hypo is to eat a sugary snack and something with carbohydrate to get you back on your feet.  This did not work.  In a two hour interval I ate 7 slices of marmalade on toast, two chocolate bars, 4 chocolate biscuits, a packet of crisps and 15 sachets of sugar.  My level remained stubbornly under 3 and I lost a kilo in weight over the course of the night.  My body doesn't react to any medication, the way it is supposed to react.  

And this problem is causing me another problem.  I was becoming anaemic on the vegan diet, despite injecting Erythropoietin, taking iron tablets and taking a multi-vitamin a day.  So, I ran a dietary experiment at the request of one of my medical teams - I had to reintroduce meat/fish/diary and see what happened.  Sticking aside any thoughts of animal welfare for the moment, the whole thing was rather interesting.  Well, it was rather explosive: my stomach now disagrees vehemently with dairy - although goats cheese and eggs are tolerated, as guests in the dairy department.  I ate meat and fish a few times in one week and my blood sugar sky rocketed.  I suspect the actual problem was that because there was something extra back on my plate, the vegetable content was a lot lower.  It was this, or the 'Factor of Eve' intervened and I have a suspected issue with animal fats (I read 'something somewhere' about transplant+diabetes+kidney disease+animal fat).    Briefly, back on the omni diet, my anaemia started to recover.  I also observed that my blood glucose was a lot worse with dairy than meat, and it was worse with meat than with fish.  

But, then I had to get back to the vegan diet to try and sort out the increased blood sugar.  My levels are coming back down again and my anaemia is going back up, despite the medical intervention as detailed above.  I could scream!  In a nutshell, it looks like I don't absorb the nutrients from tablets, I do in dead animal form.  My body does not react to medication the way it is supposed to react.  I have an appointment to discuss all of this with a dietician (poor lady) in November.  She's going to struggle with the next paragraph as well.

Diabetics are supposed to moderate their carbohydrate intake.  Yesterday, I scoffed down a bean burger, a wrap, chips and a cheeseless pizza.  My blood sugar was normal all day.  Today, for lunch I had a home made (no junk food in sight) broccoli and cauliflower curry - I had no rice, potato or naan bread.  My blood sugar shot up to 13.  My body does not behave the way it is supposed to behave.  This will be driving my Paleo pal nuts, if she is reading this!!  But it's evidence, I think, that when it comes to diet that one size does not fit all.  I would not cope on her diet, but I have to say, she looks pretty good on it!  On the other hand, I think she'd keel over in agony if she ate mine.

So what's going on?  As far as I can see, I have a reaction to my steroids.  My blood glucose is elevated (most days) 6 hours after ingestion.  It continues reacting to food for another 6 hours or so.  The doctor now thinks I am not strictly Diabetic.  I am just having a 'Diabetic-Style' reaction.  I have normal blood glucose from about 10pm until about 1pm the next day.  One day I skipped my steroids (ok, I was sick in Bognor and it came back up).  My blood glucose did not rise that day.

I'm a bugger aren't I?

To Blog, or not to Blog

It has been a while since I put finger to keyboard.  I've been avoiding it.  A couple of months ago I received an email from someone I used to know; it was unwanted.  They found me here, after searching online and they contacted me again.  I expressly asked them to not contact me during our last exchange.  I meant it then and I mean it now.  I have never deliberately cut anyone out of my life until then.  People are too precious.

However, if you knowingly make choices that could endanger my life, then you are a non-entity.  

I can't see you; you don't exist.

In Defence of Death

Having recently been confronted with  the death of one of my teenage heroes (Rik Mayall) from a significant cardiac event and today's sad news regarding the apparent suicide of Robin Williams, I have found myself thinking about my own mortality - again.  I suspect I view death a little differently from a lot of people.  It's hard not to have unusual perspectives about this subject when you've slapped Death round the face more times than you care to remember, but I have to say I am not actually afraid of slipping off my mortal coil.  In fact, I rather embrace the prospect as a natural part of life - albeit the end bit. 

 

But there it is - a euphemism for dying.  We speak of people passing on, passing over, falling asleep, buying a one-way ticket, gaining their angel wings, cashing in chips, being called to (insert deity) and awakening to eternal life - I could go on.  People don't like using the D-word; it seems so final.  But is it?  I once read that you've not truly 'gone' until the last man alive, who remembers you, is also gone.  That may be fairly comforting for Richard the Lionheart and Saladin, because I'm still thinking about them 800 years later after they pushed up the daisies. However, for the rest of us that don't make it into the history books, what are our prospects for eternity through remembrance? 

 

I think social media, such as FB, Twitter and instruments like this blog are going to give the average person a small chance of immortality - until the internet falls over because of all the idiotic junk.  It does make me smile a little at the thought of some poor, unsuspecting individual being sucked into my particular style of waffle, two hundred years after I kick the bucket - ooh look, there's another one; you really are getting your money's worth today!

 

But what about actual immortality?  Well, if it exists, I'm definitely coming back to scare the heebie-jeebies out of a few individuals who probably should remain unnamed and I may swing by your pad to say hello if I like you well enough, but I am pretty certain that most of you won't want a fading version of me loitering in the corner, whilst you're trying to eat your dinner.  What if I bring someone else with me?  I sense most of my friends are suddenly considering moving, without forwarding their address.  As for a god and immortality, I'm sorry, but you are going to have to answer that one for yourselves.  In the meantime, you'll just have to settle for me being a decent person who tries to do the right thing.

 

With that question put to the side for a blog of its own at some point, I'd now like to ask the uncomfortable question of why do people fear death, when it is something that everyone and everything will experience?  When my time comes, I fully intend on seeing my way through as much of it as I possibly can, before the lights are switched out.  I hope that there will be someone with me, whom care about and that it is not just a member of my medical team.  I'm pretty certain that my days will be ended in a hospital, probably Harefield Hospital - my second home.  Yes, really, Harefield does feel like that.  I once described myself as a homing pigeon when I was speaking to the psychologist last year; he commented that I wasn't the only one who felt like that.  It almost feels normal to be sat in that hospital bed, with an oxygen mask over my face; I've been there so many times in my life, that such events are a minor inconvenience that stop me being Eve for a few weeks at a time.

 

Actually, probably THE fear that I have surrounding my own death is the fact that I know I am chronically ill and I have a cat that depends on me for everything.  I absolutely know that I have friends who would take Harvey and look after him, but that doesn't stop me having completely irrational thoughts of me dying at home and being undetected for two weeks.  Forget me, what about my poor little meezer?  No, it doesn't bother me that I'd end up as cat food - I only hope the medication doesn't make him ill.  But this is, as I said, completely irrational.  I may be chronically ill, but I am not actually sick!

 

Probably my second biggest fear is actually being sick again.   I don't mean the sort of sick where I am griping on FB about yet another cold, or a sprained ankle, but the proper sick - the sort of sick that most people only experience in the later stages of life.  Oddly, I don't fear heart disease - we two are comfortable with each other.  I wouldn't quite go so far as to say that we are old friends, but I've been in heart failure before and I've arrested before.  It has happened.  It may well happen again, but I am confident.  I fear cancer.  I have friends and family who have defeated this disease, but I have also lost friends and family to it.  I fear cancer because I can't have chemo.  I fear cancer because I have had a fortnight's course of Radiotherapy at 1/8th of the dose of a cancer patient and it was nasty.  I fear cancer because my chances of survival are microscopic.  So, I know what I will do if I am ever diagnosed with it - no, I don't mean the small growth on my forehead that will be plucked out in a couple of months.  I mean a proper dose of this vile disease.

 

The same can be said for any other terminal issue, or anything that takes away my ability to think for myself - such as Alzheimer's.  I fear not being able to look after myself, or forgetting to take my medication.  I will end it my way, before the disease makes my life unbearable, or robs me of my ability to think.  I will do as Robin Williams did yesterday when it all became too much for him.  If I can afford to, I will take myself to Dignitas in Switzerland.  If I can't do that, I know I have enough medication in this house to make the dinosaurs extinct again, so it should be just enough for me too.  I actually think suicide can be the action of a brave person.  If it is successful, it is irreversible; there are no second chances.  To know your actions mean that you are never going to walk down the road, holding hands with your loved ones, takes bravery and a type of strength, that people may assume is missing in those with mental health issues.  They are wrong.  Suicide in a desperate situation is strength and I wish that people would not see it as a weakness.

 

If I am capable of doing so, when my number's are coming up, I've every intention of holding my own wake.  I want to be able to say goodbye to my loved ones.  You're going to have to be someone very special to be invited to that party.  And yes, it is a party.  It is a celebration.  Funerals, memorials, wakes are something to be celebrated.  I do mourn the people who have departed, but I also celebrate their lives.  I think of their achievements, the loved one's left behind, I smile at their naughty streaks and remember their kindness.  I may shed a tear remembering a friend's passing, but I also have a smile and a chuckle for each of them .  They are not gone, they are imbedded in my heart.

 

So, why should I not get to celebrate my own life, rather than leaving it to people who will be struggling, because they are sad?  Why do they get to have the party, when I don't? I already think there is a lot to celebrate.  I turn 40 next year.  How on earth did I get to 40?  I don't mean that in the usual sense of 'where's the time gone?', I mean how did I make it to 40 years with my health problems?  I think about all the things I have done in my time.  I know I've had to slow down a lot over the years, but I've still crammed more into this time than a lot of people would manage in two life times.  I want to join in with that celebration.  I want to pick the music, watch my friends dance, listen to their memories and then maybe I can go, knowing I am loved and cherished.  Now, I don't want you all to start wondering if something is wrong and if you get invited to a 40th next year, I don't want you to start thinking that that may be the farewell party.  This is just my point of view. 

 

In the meantime, stop worrying about death, or fearing it.  We all go through the process.  For the religious amongst you, you know you will be reunited with your loved ones.  For those that don't believe you know that through the law of energy conservation your energy is ever present.  Energy is verifiable and constant; it doesn't diminish, or increase.  It's just that after death you are no longer in one piece.  In either case, what is there to lose?

 

As an end note, when I die, I either want to end up at Harefield, so they can poke about inside, or I'd like to do a Jeremy Bentham (you'll have to ask Dr Google about that ;p).  But above all, I want to be remembered for doing it my way.

 

https://www.youtube.com/watch?v=Sv5DdTIKk48

 

 

 

 

 

Vaguely Vegan - Ditching Diabetes

So, it's now the week before my MOT at Harefield Hospital and I have just started recording my blood glucose results to take with me; I am hoping to see a change on the last time I did this.  For those of you who like numbers, consider these figures below.  

This first of set of glucose readings are my average results over a week, on my 'old/normal' diet.  

Before Breakfast: 8.8

2hrs After: 12.6 

Before Lunch: 9.5 

2 hrs After: 16.2 

Before Dinner: 10.1

2 hrs After: 15.4 

Bed Time: 13.2

The fasting glucose reading should be about 5 and healthy seems to be under 8, although if you are Diabetes Type Two, then up to 8.5 is acceptable.  You can see, they were all awful.

The second set of results are the average results over a week, after three weeks of being vegan - yes, the first two weeks were a bit hit and miss, but that was me getting used to things.

Before Breakfast: 5

2hrs After: 8.5

Before Lunch: 8

2 hrs After:14.3

Before Dinner: 8.2

2 hrs After: 10.8

Bed Time: 7.4

The lunch time spike happens six hours after I take my steroids (DAMN YOU PREDNISOLONE!).  I am not sure that I will ever be able to correct that, because I have to take the stuff, like it or not.  Back to yesterday's post; this is the point I tell myself that I like the drug as it supports my lungs - even if it makes my face puffy.

Anyway, just to prove that I am not completely barking mad and that this was not an idea I randomly plucked out the sky, here's a link to watch that explains the thinking behind my experiment - courtesy of a friend who messaged the video to me yesterday.  

http://www.myfoxhouston.com/Clip/10320937/correlation-between-meat-and-diabetes#.U7Mg1LbjYQ8.facebook

It was not this film which made me consider a dietary change, but I didn't want to bore you all to death with some of the things I have been reading.  In a nutshell; in some large-group studies it has been noted that people on high saturated fat diets (meats and dairy - not just meat as suggested in the video), who were already insulin resistant were more prone to Diabetes, high blood pressure, high cholesterol and Kidney Disease.  I have all four; I ate meat and dairy products.  The people in the studies, who were placed on a plant-based diet, managed a significant improvement in their blood glucose results.  I am seeing an improvement in mine; I'll have to wait until next Thursday to see if the other results have improved - or not.

It's an American clip so that means it may not be what your doctor over here in Blighty would prescribe.  I am also not suggesting anyone changes their diet!  You have to eat what is right for your body, but I am fast coming round to the idea that as far as food is concerned, one size does not fit all, but I'll come back to that another day.

Finding My Donor Family III

I have to admit that since I posted my original note, that I have stalled in my quest.  This has been largely due to commitments at university and if I am honest with myself, I suspect that nothing more will now happen until August, when I am no longer bound by timetables, or deadlines.  And then I have days like today, where the enormity of the situation overtakes everything else in my head and I have to just stop what I am doing and shed a few tears.

I cry because he missed out and because his entire family missed out in watching him do, learn, explore, grow, change, develop.  I often wonder about the lad who saved my life.  He'd be 36 now, if the facts that I have are correct.  Would he have married?  What would he have done?  Was he a good kid? Was he a little monkey?  What happened to his best friends at school?  I know mine rallied  when my life support was nearly switched off - in fact their actions saved my life; I came round, out of a coma when mum repeatedly played the tape of them singing, laughing and talking which they'd sent to the hospital.

I cry because I can never make it right for that boy.  If a kid hurt themselves in the playground, I used to give them a hug and just be there for them; I can't do that for him.  I know absolutely it was not my fault that he died, but there is such a thing as survivors guilt.  I am alive, because he is not.  I just want to scoop him up, give him a big cuddle and tell him it will be alright.

I cry because next year I turn 40.  How on earth did I get to 40?  HOW?  It beggars belief that I am probably going to celebrate this milestone.  I am stunned.  Most people seem to run away from admitting they are THAT old - I'm running towards it, with my arms open wide, ready to embrace the next decade.  The fading looks, the increased wrinkles are minor details that really don't matter.  

I  AM GOING TO MAKE IT TO FORTY! 

I cry because I wonder if I have done enough.  Has my life been justification enough for that hellishly expensive operation and that lad's passing?  Have enough of my days counted?  Have I tried to do the right thing?  Have I been honest enough? Kind enough? Thoughtful enough?  Achieved enough?  Truthful enough? If I ever meet my donor mum, will I meet her expectations?  I have two lives for which to account; have my actions been the right ones?  Should I be a better person?

I cry because of the chances I have had, that would have been denied me, had I died back in 1988.  It so nearly wasn't my turn, but a twist of fate, or a stroke of luck, a guardian angel, or the devil watching over me - however you choose to phrase it - has granted me some of the most amazing experiences a person could wish to have.  I have never managed to work out whether I was the luckiest bugger alive, or if I have had the worst hand of cards dealt.  I tend towards the former, but occasionally the latter wins over.  Either way, I know I won the lottery in 1988 and gained a prize worth more than the multimillions you can win on the Euros.  

Vaguely Vegan - How Vegan is Vegan?

This is something I have been asking myself over the last few weeks.  I am primarily a dietary vegan.  I have multiple friends who are animal rights vegans and a couple of environmentals - there is some overlap, but it appears they are not identical and I am guessing that you can figure out the approximate difference between the two.  But whilst I identify strongly with the health aspects of giving this a go, I am not completely insensitive towards our furry friends, so I have been looking at other ways of tidying up my own animal footprint - and my environmental one as well.

Being a vegan is expensive, if you go the whole hog; I've seen toothpaste at £4.99 for 100ml - there are cheaper varieties - but compare this to Tosca's which 40p for the standard brand.  I can't afford £4.99 for a tube of toothpaste and I think you are barking mad, if you think this is a normal price for cleaning your teeth; I suspect the big supermarkets won't give a rat's arse about animal welfare in the ingredients list for personal hygiene.  So what do you do as an animal rights campaigner?  Shop around and suck it up, I guess.  I'll stop monkeying around with the appalling animal jokes for now...

Then there are the clothes in my wardrobe - countless pairs of funky goth boots and a leather jacket.  I'm dietary, so perhaps I am less worried about these items than others, BUT...imagine if you were of the animal persuasion.  Do you throw these items out? Give them to charity?  Sell them on eBay and use that money to buy new vegan shoes?  I don't know what the answer is really.  Mum gave me the money to buy a lovely pair of boots at Christmas - they cost £175 and are made of leather.  I won't be chucking them out, but even I can see there are very good boots out there that are not made of animal skin.  Then again, how do I know that those leather-free shoes haven't been glued together with a by-product of an animal if you buy them at Asbo, or Sanesbury?  

Yes, you can buy shoes and boots from vegan shops by getting yourself into London to visit stores, but have you tried buying shoes that fit and that are comfortable over the net?  The Factor-of-Eve: I am not quite a size 3 and my feet are so wide I can't wear kids shoes.  My bunions are horrific and I have slightly clubbed toes, left over from pre-transplant days.  On top of that, my feet callous up quickly because my walk is not quite right.. I usually only find shoes in M&S that I can tolerate on my feet - they are leather.  I don't go into London very often anymore - the travelling is just too much now and I am not prepared to order something over the net, find that it is wholly unsuitable and then have the stress of getting to the PO to return the item and wait for the refund. I've hardly left my house in the last 2 ½ weeks.  I am not always capable of running about, completing errands like this.  Clearly my footwear problem isn't going to go away any time soon and in cases like this, the best 'vegan' approach is probably to look after my current footwear and only replace it when it can no longer be repaired. Hopefully by then, this issue may have resolved itself - somehow.

Another idea that has cropped up again in a conversation is the question of eating eggs and dairy produce.  I am currently avoiding anything animal based, so this is not aimed at myself, but I do have one friend who is considering adopting some commercial chickens that are bound for the knacker's yard.  They'll be free range and have a home for life on his land - he'll benefit from the eggs.  I like this idea - a bit of give and take!  Further more, instead of a life span of 68 weeks, his chickens will get their full run of 6-7 years.  I suspect some vegans would disagree with this, but if I had the space (and was allowed near birds) then I think this would work for me.  

Then a week or so ago, I stumbled across http://www.farmaround.co.uk with their 'Cow Nation', 'Hen Nation' and 'Izzy Lane' (sheep).  If Harefield 'strongly suggest' I reintroduce dairy back into my diet, then I will be sending my custom to them.  I'll leave you to read the website and decide for yourselves if this is a good compromise, or not.  

To be absolutely clear about this, I am not 100% sure what Harefield will say when I tell them about my Diabetes experiment.  I've heard other patients having their heads bitten off, for changing their diets and not informing the hospital as it seriously mucked about with their blood test results.  Hopefully I have been sensible and kept my fat consumption high enough, to be certain of absorbing the immune-suppressant, but I am bracing myself for a bit of a telling off.  I'll know on the 10th whether I can stay vegan, or have to switch to a variation of vegetarian/pescetarian/omni, but at least I feel 'safe' knowing there are some animal-friendlier alternatives out there.  

And what about my medication?  That is clearly not going to be vegan and I am not stopping taking them, come hell or high water!  Even your basic pain killers aren't necessarily free from animal products.  I'm not even going to bother asking if I can be switched to an animal friendly version: I'm allergic to most immune suppressant drugs and honestly I take what I am told to take and I like it - at least, that's what I tell myself.  Honestly? Medical testing on animals will happen.  However, I think we've enough hair dyes and lotions to last a million life times, that we should not be testing those on animals again.  But, if it came down to a hospital testing a drug on my mum, or on a monkey - the monkey's taking the drugs.  When it comes saving the life of  a family member or a friend, my morals go out the window...

Vaguely Vegan - Caffeine Conundrum

So I ended up eating beef, when I went out with a friend the other day.  There was NOTHING on the menu that I could eat, given my restrictions and my current lifestyle choice, but that lunch has served as an interesting experiment.  Well, I am the sort of oddball that finds blood sugar reactions interesting.   I should have done Science this time round at uni; maybe I'll take it up after my current interests have expired.

Anyway, I digress.  I'd been having some very nice glucose levels recently and then I ate *that beef.  Hmmm. It's taken me since Thursday to bring the spike in reading down from 13 to 9.  Let me be absolutely clear about this.  I now wake up with a reading of around 5; after brekkie I am under 7, by lunch time I am usually around 10 and then with a big gap until dinner, I am usually back around the 7, or 8 mark when I go to bed.  It's still not good enough, but the 13 I scored on Thursday was a bit of a shock.

On top of this, I've kind of given up caffeine.  Those that know me, know 'I drink tea, therefore I am'.  I had a coffee yesterday morning and since then, it has been water all the way.  I am not sure how much difference this may make, but dehydration can cause glucose levels to rise and tea is a diuretic.  The odd thing is that I haven't missed it - not in the slightest.  I suspect this will change at some point and I know I will have another cuppa, but it is odd.  Maybe the three litres of water that I am now consumming each day are actually doing the job!?

In a nutshell, I am now seem to sticking to this vegan thing and I am avoiding caffeine (chocolate is not disqualified yet). If I don't have glowing skin, a flat stomach and a healthy blood sugar by the end of the summer, I am going to want a refund.