Sunday, November 21, 2010


And so I should catch up on the health of my family, lots of it was on my other blog here.

Labyrinth is officially considered intellectually disabled by our lovely government. This means we are going to be getting a tiny bit extra money by fortnight now. This hardly covers our cost of living but it's better than nothing. Well, we could be worse off, but our rent is going up and so is our food bill with all the allergies in the family.

I have sjogren's syndrome. Raven has some wierd eye problem where he has extreme helio-sensitivity and even water makes him hurt. I can't imagine he has the same problem considering 95% of SS sufferers are female. He gets mistaken as a girl often enough, but he still has the unmistakable male parts. He also has some behavioural problems, and tells me constantly that he loves me and I am special. It's lovely but it ends up frying my brain. I've also had what started out seeming like classic glutening symptoms that didn't go away for nearly two weeks, now I've got a cough, sweats and a temp. It seems to have gone through the children too, like wildfire.

Dante has his depression. He's seeing the top guy in the state, he saw him once, was so concerned he went and booked him appointments for over a month. He also told me today he thinks about being female a lot. I don't know how to take this, as he is often told he is a very beautiful girl. He was once singled out by my brother at a gathering who asked me who is sitting by his daughter, he told me he thought Dante was the prettiest girl in the room. More often than not people who don't know him think he's female. He's just a vewy pweety boy, really!

Kai has his incontince. It is severe.

Raven, Dante and Monika have all got wierd allergies, such as Monika's carotene issues. Gluten of course for Raven. Dante is reed thin like Raven, but has height, he's on the 60th percentile. But he will, if he hugs it through puberty as he has since birth, be shorter than Monika who is 75-80%ile. She is wearing clothes that Raven is handing down immediately! She wears a size 5, she only turned 3 in late September. And her hair has lightened to Dante's shade of honey.

Andrew suffers from his headaches. We've finally accepted his depression is a seasonal thing, but he's depressed now because of his constant headache. I hope its impacted wisdoms so he will get the relief he needs sooner than later.

Oh yeah, I've got impacted wisdoms too, I'm on a three year waiting list for surgery as one of the roots has intwined with the nerve, and I'm looking at a good chance of a broken jaw during surgery or the following three months as it will leave just half a centimetre of jaw bone left when the damn thing is removed.

I also am on a waiting list to see a public hospital Rheumatologist. I had a blood work up to see if I was positive for Sjogren's and at the same time the GP ran some more tests. Result: I need to see a specialist, a lot of red flags were raised. She will not elaborate.

My broken arm last year was not a coincidence. I have calcium absorbsion issues, as well as iron ones.

I have depression. Anyone?

I've severely pissed off Lady Luck, haven't I?

Sunday, May 23, 2010

Mixed News.

On Friday, we had our second appointment with the amazing Dr Donahue. While it looks like at this stage that it is only Raven and I are the only with Coeliac's Disease, Monika definately has a carotene allergy, and she has either a cow's milk intolerance or allergy. Dante has probably got Lactose Intolerance. Labyrinth is going to have extensive psychological and physiological testing for her various problems. Kai is all good. Any one of the others do have the potential of developing coeliac's disease (or it didn't show up in the bloods, apparently it doesn't often with children), but considering Dante can predict when he will get diahrea, it's due to milk usually, Monika's diahrea has really lost it's severity since severely removing dairy and carotene from her diet. The doctor believes this will disappear eventually. I do hope that none of the other's has got it, because they'll continue to cop damage until it's spottable/spotted. This can be tested for annually. We have some tests to run on Dante, some strategies to use with Kai (its not a medical issue), lots of testing for Labyrinth and to keep doing the same as we are dietry speaking and homeschooling.

I've really been fantastic, with the sleep apnoea machine filling in a significant part of my health recovery puzzle. I have been feeling amazing, actually able to keep up with a pretty great aerobic routine and have lost a dress size. But on my birthday (I'm cursed I swear) I pulled a muscle in my back and haven't been able to excercise (or do much fun stuff) since. I've got bruising all over my back, and slowly getting rid of the knots. It was caused by from a crouch jumping straight up into the air to a straight position, then back. The problems arose when the Wii remote and Nunchuck were not far enough apart (and geez I'm only average height) and it tugged on my right side (been doing the high impact version on the Active (game?). It is also naughty of me as I've a curve in my spine and I shouldn't jump or do high impact. Huh, I have been handling it OK until then, I'd completed 6 days at that stage. I was doing other stuff too, this is just so frustrating! The one good thing this week it seems is Dr Donahue accepts that Raven and I are both Coeliac, while he can't 'officially' give the diagnosis he will give a letter to us to the effect that Raven must stay on a Gluten Free Diet. When Raven gets older he can make a decision to do a gluten challenge and see what happens. It's pretty obvious though, and it would suck for him, but it is his decision when he is old enough to do so. I was totally divided in wanting the full diagnosis and not wanting him to go through the biopsy.

That's all really, besides lots of recipes I'll be sharing in the next few days! Here's to a better health for all of us!
Cheers, Q.

Tuesday, April 27, 2010

Getting Somewhere.... FINALLY!!

My health is getting lots better since using the Sleep Apnoea machine, excercise and obviously off the gluten/mostly off dairy diet. I feel flexible, alive and energetic, YAY!
All of the children except Raven has been on a mini-gluten challenge followed up by a blood test for all of them, Raven as a bit of a control.
The bloods were taken on Monday, hopefully in time for the results to be ready for their next appointment with the pediatrician in three weeks. He is a great doc so far, it took some pushing to get this far, but finally we're there, and he's hearing us, nice feeling. But really it is expected just never seems to happen that way...

Labyrinth has a Sleep Apnoea test when Andrew has one middle of next month, if she has that it might explain her move swings and lack of attention span at times.

Monika is still sore and sick, the poor lass. Little improvements are big here, and she has been a little improved, strange since she's had more gluten than usual...

Other than that I'm going to make Cornbread for tea, which I'd better get on with right now!
Weight has been coming off, it is visible now... but still got quite a bit to go... too much really but I'm capable and determined now! Until next time Q.

Saturday, March 20, 2010

Lots and a New Recipe - Greek Salad!

Greek Salad
Salad Ingredients:
1 bitterfree cucumber,chopped
125 grams fetta (we used sheeps), cubed
10 - 15 tiny roma tomatoes - chopped
1 Spanish Onion, roughly chopped
10 black olives,halved
Mix together in a large bowl.
Dressing Ingredients:
Balsamic Vinegar with Roasted Garlic
Raw garlic
Generous spoon of Basil Pesto
Equal sized spoon of chopped Chives
Mix well then carefully toss through salad.
Obviously this recipe is GF free, Cow product free, extremely easy, quick and worth it in yumminess. The above was served with Woollies brand (NOT Select) steak chips and steak. I emphasize the plain brand as it is oddly the case, the cheaper brands are often gluten-free while the more expensive brand includes wheat based mulitdextrin, excluding it from the GF diet.
Monika is definately still suffering from chronic and sometimes health threatening diahhrea. Keeping the food diary helps - it's shown up a probable Carotine sensitivity - not great - no carrot/pumpkin etc. To keep her borderline we have removed this from our diet - but still she's on gluten. Not until we get a biopsy done - who knows when... and all this time she's losing weight, sick all the time. It is a hair tearing moment.
Raven is still GF and he's changed into a healthy,growing little man. He just holds onto his leavings - but can do them on demand. This is usually us putting up guide posts - he must do chores, do his lessons, go toilet before he can play the game - Little Big Planet. It's working but how long will it be before he's happy to just go without prompting?
Dante's been sick on and off this week. All from party food I'd wager. A particular example that flies to mind is he ordered a milkshake at George's party on Wednesday night, he had diahhrea all day Thursday...
Kai's good. As always.
Labyrinth is emotionally a timebomb, always going off. She's over tired and grumpy, poor concentration, a real problem. So, she is off to have a sleep study in May, same night as Andrew - to test for sleep apnoea for both of them.
As for me, it's up and up! I've been using the Sleep Apnoea machine, sticking to the GF diet (15 months so far!) I've got motivation, energy, less headaches, pain minimum. I do excercise everyday. I think I've isolated another piece of my puzzle - Sjogren's Syndrome. I can't blame my wisdom teeth problems on it though, thats due to a small jaw size. Scary! Proven again by having my jaw measured for the sleep apnoea machine, I needed small. Lots happening - much to be happy for. 15 months ago I just didn't want to go on, and now the hope has grown tangibly. Tough they've put off me seeing a dental surgeon again for another month. ARGH!
So most of my frustration lies on the doorstep of a broken medical system. If we could but be looked after decently Monika wouldn't have to suffer so, and all the waiting for my teeth is an issue too. FIX it up Ruddites. NOW!
That's my small rant over, if you try the salad you will enjoy, Q.