Food glorious food…..NOT

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Food glorious food…..NOT

Category : Family

I’ve been quiet on here for the past few weeks and that has been a direct reflection of how busy things have become.  Once I have a great idea for a blog post, 100 other things rear their crazy, ugly heads and I don’t end up getting anywhere near the computer.  Well, except to try and get last year’s tax done anyway.

Rather than try and fill you in on EVERYTHING that has been going on (because, a crapload has been happening in the dairy industry right now that needs it’s own blog post), I thought I would fill your on some health issues that have escalated here.

In a family of 6 people, you would think that a reason percentage of those that have ongoing health issues would be less than 20%.  That allows for 1.something people to have some health crisis going on at any one time.  Well, thanks to some faulty genetic coding, that figure is somewhere around the 85% for us.

Over the past 6 months, with a change of paediatrician, things have become a bit more serious about getting to the bottom of Biddy’s stomach issues.  6+yrs ago, she was admitted to hospital due to severe and unrelenting stomach cramps.  Ironically, it was during this hospital admission that we found out that she has hypothyroidism, although this is not related to the stomach issues.  Nothing we did helped and no medications eased them.  The cramps followed no pattern and the duration of them could last from 20 minutes to 6 hours.

After copious blood tests, stool samples and home remedies, our new paed suggested that it was time to see a GI guy.  So 4 days before Christmas last year, Biddy toodled off to Cabrini for a gastroscopy and colonoscopy (double banger!) to have a decent look at her guts.  Initially, things looked pretty good, although biopsies later on suggested that she was developing coeliac disease (supported by the fact that she has the gene for it) and breath tests done this year have come back that she cannot absorb fructose and sorbitol.

Two weeks ago, we saw the paediatric dietician at the Royal Children’s Hospital and was told that she needs to go on a low FODMAP diet for 8 weeks prior to reintroducing foods back.  I had heard of FODMAP……I had no idea about FODMAP. And now I know why!  Bugger me!!!!  It’s a bloody minefield.

I know that those that have been following a FODMAP diet tell me that it gets easier, that a lot of what we eat is already low FODMAP (let’s face it, if you stay away from packaged crap, you are probably going to be ok), but one area that made me feel like an inadequate mother was that of fruit.

Kids – and mine are no exception – if given the choice, will pick junk foods over wholesome foods.  Just watch Dreamworks “Over the Hedge” if you don’t believe me.    So in the face of them grabbing some pre-packed, chemical laden, artificially sweetened, colour and preservative added but bloody tasty snack, I often direct them to “have a piece of fruit”.  Turns out, that advice is not always the best.  For all kids, but especially for one that is unable to process fructose! (By the way, did you know that for kids aged 9 – 12yrs, they should only be having 2 pieces of fruit per day?  No, either did I until last week!).

I have had 2 weeks to get my head around this FODMAP thing and just like anyone that has ever had an assignment due and has left it until the last possible moment, I am sitting here, pulling my hair out, feeling like I want to cry, because I am trying to work out what I am going to send Biddy to school with in her lunch from tomorrow.  Tomorrow is D-Day.  Or should I say F-Day (I can tell you, I can think of a few things F could stand for).

I know I am going to cock it up.  If we manage to get through the 8 weeks of the elimination phase without her starving to death we might be on a winner.  At this point she is going to be living like a convict….on bread and water.  And by bread I mean corn chips, because she can’t have bread.  Well, not the regular bread anyway.  Of course she can only have the super expensive gluten free varieties that start at about $6/loaf.  I can tell you, none of that stuff will go mouldy in the bottom of the bread bin.  Like Darryl Kerrigan in The Castle who shoved everything of value into his poolroom, all my valuable food groups are “going straight to the freezer”.

And that leads me to another point.  The cost of specialised diets.  And the stuff-arsing about of organising specialised diets.  Biddy’s dietary issues are not going to kill her, although I’m pretty sure that she feels like she might as well die when she has an attack.  But for those that are unaware, her brother H does have LIFE THREATENING food allergies.  That little cherub is anaphylactic to about 5 types of nuts (not just peanuts), eggs and dairy.  Already, we have a modified diet around here just with him.  And we HAVE to stick at this one and I cannot fuck it up, because I will KILL HIM if I do.  Truth.

So this brings me to why I am feeling utterly overwhelmed right now.  For Biddy to have certain foods, things are swapped out and replaced to give the right “mouthfeel” or consistency.  A good example here is of swapping out dates for walnuts when making energy balls.  Because Biddy can’t have dates.  But if I replace with walnuts and H accidentally gets into them, the walnuts can kill him.  And there are things in reverse.  If I swap out eggs for avocado so H can eat it, Biddy can’t because of the fructans in avo.  Sigh.  Do you see my issue?

Already, trying to fit things around H’s allergies is a juggling act.  There are very few recipes that I can just run with for him, because do you know how many dairy, nut and egg free recipes are out there?  That a 5yo boy will WANT to eat?  Not all that many.  A lot end up being pretty bland and ordinary.  Now couple this with cutting out foods that are high in carbs.  Oh God give me strength.  And that is NOT a blasphemy….I really do pray to Him to give me strength in this area.

And the cost!  Don’t get me started on that.  Not only are they limited in what they can enjoy, but of many of the things that they can have (GF, dairy free etc), the cost is disproportional to the product.  I mean, come on…..$6/loaf for GF bread?!  Surely by now we know that there is a market for GF foodstuffs, so why hasn’t the price come down?  There are people out there that aren’t coeliacs and they eat GF bread.  The market is not constrained.

On top of this, live in rural Australia and try to access some of the products.  I have a feeling that internet shopping will be my friend.  Not for my bank balance, but for my children.

So, if I haven’t gone completely gaga and I actually manage to poke some food at Biddy that satisfies all FODMAP criteria and by some bloody miracle she actually enjoys things, I’ll report back.  I admit to not being very hopeful right now, but I don’t have much of a choice.  And as a mum, of course I will do what it takes to improve my kids quality of life.  Even if that means giving up all my spare and personal time to research, shop and prepare meals.


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Surgery, death and post op recovery

Category : Family , Stress

Ok, a number of people are waiting on an update from me regarding surgery……here it is.

Suffice to say that I made it through ok, even though I did experience a looming sensation that I would die in surgery.  I know that sounds melodramatic, but for the first time in a long time, I really did think that luck and good management were not with me.  Maybe it’s because I recently lost an aunt who was admitted to hospital and she never came out.  And she looked fine in the photo I saw of her the day before she passed away.  It took me a long time to come to terms with it and I would suggest that given my mental state in the lead up to my own surgery, I can see that I have not dealt with it well at all.

I even broached the subject with Mark as to which kids would get what special and significant pieces of jewellery.  This conversation did not go well.  Mark refuse to listen.  I also told him that under no circumstances whatever, he was to sell all my card making and scrapbooking supplies for what I told him I purchased them for!  Bernie Butler, this is probably a job for you and mum to do if the time ever comes.

But all this got me thinking.  Since having kids, Mark and I have not finalised our wills.  Sure we have the main stuff covered, like the farm, the assets and the land.  But we don’t have the most important things covered.  Our kids.  This is a hard one.  But after having the shit frightened out of me in regards to this whole episode (not just the surgery but the whole thing), it has me thinking that we better get this stitched up.

But it is not as easy at it seems.  When you have a gaggle of kids, it is difficult ask people to take on that amount of responsibility.  Either the people you trust live too far away for the kids to keep their normal lives, or they have moved into a different phase of their own family existence, or age might be a factor with them.

I know that solicitors and legal professionals tell you to “just make the decision, put it in a drawer and move on”.  Really the chances that both Mark and I will die prior to at least Tom reaching age of consent is pretty low.  But it could happen.  And this surgery and my unfounded fear has bought it all rushing back at me.  So this is back in the table as far as a discussion.  And quite possibly, the older kids might be able to have some input into it all as well.   However, seeing as the 6 of us cannot agree on what take-away to have at dinner, the chances are we are going to be pulling names out of a hat for guardianship!  So get ready……it’ll be like winning the lotto!

But back to the surgery.  Well, Monday morning loomed fast….very fast considering I didn’t sleep very well overnight.  But as I was first off the rank, my wait time was about 3 minutes to get into pre-op and then about 30 minutes to get into anaesthetic.    Mark and I had to part ways at this point and I was getting more and more worked up.  Greg Malham, my surgeon, came in to see me and after I told him not to stuff it up he reassured me that he does these all the time and everything would be fine.  He said it would be much like me not letting any of my swimming kids drown when I worked…..he would not let me become a quadriplegic.

The anaesthetist, Arthur Penberthy, was a champ.  Quiet, funny and once I started crying because I was as nervous as shit, he knocked me out!  LOL.

The surgery took around 2hrs and I woke up in pain, feeling like I had been hit be a tractor and disorientated.  I know people were talking to me, but I dunno what they were saying.  I had a drain tube in my neck to relieve bruising and soreness, and a catheter because I can’t pee on heavy narcs.  Over the next few hours, the pain from my neck was really only localised inside my throat where they pull all your innards around and out of the way, but the pain in my back was something else.  I couldn’t lift my arm very well and I had weakness down the left side of my body.  I was drugged up enough so that this did make not a scrap of difference to me (except the pain), but Greg and the team were not happy and quickly shot me down for another MRI to make sure that everything was still where it should have been after surgery.

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Greg came and spoke to me yesterday about the extent of the injury.  It turns out it was bad.  Quite bad.  Worse than he saw on the MRI.  I was one good knock away from being a quadraplegic.  And because of where the spinal cord injury was, I would have also been on a respirator for the rest of my life as well.   Of course, I was upset because I wasn’t being flippant with my health for all this time.  I simply have not been in any pain and had no idea had bad it actually was.  But everything is stable now; the new cage is in place, the screw are holding and as an added benefit, the scar I will end up with will be minor because of the way they stitch everything back up.  I will be fine.  And so long as I am a good girl and allow myself to heal properly, I will have no trouble resuming my normal lifestyle in the future with no risk to any part of my spine.

The weakness has also improved everyday.  When the drainage tube came out of my neck yesterday, the pain in my back disappeared.  So it must have been referred pain.  I am in pain of course still from surgery, but we are getting on top of it  They have these pain management teams that come around every day to see you.  They have change my meds around quite a bit and I think we have got it right with a new regime for me to go home with.

So with the catheter out, the drainage tube out, the IV out and the oxygen off, I think I am good to go home and face the mob…ahem, I mean the kids.  And sort out once and for all who will be the guardians of my galaxy if I wind up in a life threatening situation again.


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Oh, can it get any worse?

Tags :

Category : Family , Stress

Ok, so 2016 has not been a great year.  In fact, it has been a bloody terrible year.  A number of my friends are also saying the same thing.  What happened?  What bad thing did we all do to deserve all this bad ju-ju?

In a nutshell, personally, we have been hit with the milk price to end all milk prices, rain that just won’t bloody stop,  have suffered a number of health related issues including a knee operation for Mark, gastro for the kids, food poisoning for me, and a resistant staph infection for Mark.

Many of you know that I recently had an extremely painful event that was caused by some nerves in my neck.  I had an emergency CT scan done and a follow up MRI which all pointed to some dodgy disc in my neck that seemed to be the cause.  Yesterday I had an appointment with a neurosurgeon in Melbourne who frankly and bluntly told me the truth.  And it is not pretty.  At all.

He told me that I have a disc that has moved out of it’s place and is now trying to crush the life out of my spinal cord.  For those that know anything about vertebrae, it is my c5/6 disc.  Unfortunately, it is already causing some spinal cord issues (nerves and reflexes) and – here is the whopper – if it is not operated on immediately, it is only a matter of time before I become a quadriplegic.

Are you freaking kidding me???!!

Things got very serious very quickly with him going into see the lady that books the surgeries and asking when various other attendants would be available.  He assumed that I had only had the symptoms for 2 or 3 weeks, not the 7 or 8 months (or more!) that I admitted to.  He told me that there was no way that he would allow a 46yo mum of four to become a quadriplegic.  My body is in some sort of hyper state.  It thinks it is in constant pain even though I don’t notice it all that much.  Maybe I’ve put up with the constant pain for so long, I just see it as a norm.

But it’s not, and there might be a fix!  That’s a bit exciting!

So because this is all such a rushed thing now, I will be operated on Monday 17th October.  Yes, just a week and a half from now.  I will be in hospital for 4 days and then pretty much doing nothing for 4 weeks after that, including no driving.  Following that, 4 more weeks of only light movements building up to moderate in the following 4 weeks after that.  In 12 weeks, I should be back to normal.  So long as nothing goes wrong.

And here is the not so exciting bit.  The operation carries it’s own risks over and above normal surgery.  Somewhere between 2 and 3% have complications.  Wait a sec….that’s 2 or 3 people in every 100.  God I hope that he’s operated on 99 people so far this year and already had his 2 or 3 people.  I’m gold in that case!  The complications can range from affecting my vocal cords – which Mark is a little too excited about for my liking – to actually paralysing me or causing quadriplegia which is the very thing we are trying to avoid!  Yikes.  From the sounds of it, it is a little complicated as they go in through the front of my neck and have to traverse my innards (important shit like my vocal cords, carotid artery and spinal cord!) to get to this little piece of gristle that is causing all the problems.  He will take out my disc, give me a new one (hey, I like the sound of that!) and also give me a cage thingy that will keep it in place.  It’s sleek, black and I’ll sort of be like a terminator.  Made up of space age parts.

Wanna see?

What the new disc will look like

What the new disc will look like.  It is actually a cage with either bone fragments in it, or artificial bone.  I think I’m getting artificial bone.  I understand that my own body will deposit bone on this over time and fuse the space together.

The "cage" that will stop the new disc from coming out.

The plate that will stop the new disc (cage) from coming out.

The "cage"

The plate.   Those are some tough looking screws!!!

So, in the meantime, I am trying to organise how the 4 kids will be ferried around for the time I’m out, how the house will run, trying to get it looking like some sort of liveable habitat in case I get home care, how to manage my little swimmers, how I will manage my Stampin’ Up! business, and how we will manage silage with a farm worker down (and me supposed to be filling in).

I know it will all work out, but right now….it just seems a bit overwhelming.  Bear with me if I fall behind in stuff.