Seeking other New Zealanders with Psoriatic Arthritis

I'm looking for other New Zealanders with psoriatic arthritis. We're being treated like second class citizens when it comes to Pharmac funding the better drugs for our condition, drugs like Humira and Enbrel, the TNF inhibitors. Pharmac are now funding it for people with rheumatoid arthritis, but not those of us with Psoriatic arthritis, even though it is also an inflammatory arthritis. I've heard there is a rheumatologist writing a paper in support of the TNF inhibitors for the treatment of PA, to present to Pharmac, and I'm sure she could do with some support. Does anyone out there realise just how much better we could be on these drugs? Taken in conjunction with DMARDs like Methotrexate they are making many people in other countries a whole lot better.

In my case, PA came on a couple of long years ago. I don't have psoriasis, but my mother has it. The genetic link. The pain started in my hips, and rapidly spread throughout my entire body, affecting joints, muscles and tendons. It's a horrible disease that does your head in, seemingly moving its way around your body, going all out in one area then moving on to another. My GP and the public health system were no good, so I requested a referral to a private rheumatologist, the best move I ever made. Psoriatic arthritis MUST be treated early. I've tried sulphasalazine ( gave me headaches after a while) then moved on to Methotrexate. It's slow but steady progress has changed my life back to being bearable, and we've had success adding Plaquenil into the mix recently.

I'm in a pretty good state at the moment, thanks to a very good rheumatologist and a long time getting my head around this awful disease. Oh and great support from a PA forum in the UK. But if it gets worse, I'd want to be able to get my hands on those TNF inhibitors. Used in conjunction with Methotrexate they're producing a better success rate than Methotrexate on its own.

I'd love to hear from other PA sufferers in New Zealand, I know of only two. And anyone worldwide who would like to share their journey with this disease.

Our Japanese Raisin Tree fruited!

Our Japanese Raisin Tree has "fruited" for the first time, and man those "raisins" are tasty! I found them lying on the ground beneath the tree and wondered what the heck they were, then tentatively took a bite. Yum! They taste just like raisins, even raisins soaked in rum, with a taste of nashi pear to it too. A good crop is still sitting way up there in the tree, so I'm hoping a windy day will send them to the ground. They are too high to reach by a ladder.

The raisins are not a fruit at all but rather a swollen flower stalk. I thought it would be a cool addition to our subtropical orchard, but wasn't prepared for just how yummy they tasted. I reckon they would taste great on a cracker with cheese, and apparently they can be chopped and added to a fruit cake, probably muffins as well. Everyone in our household loves them, so the crop will be well used.

As well as Raisins, we have Casimiroa fruit rotting on the ground ( heavy cropper) and the Inga bean tree is laden with beans which are almost ready to eat. The kids love to climb the tree and pick the beans, and then sit up in the treehouse and split open the beans to get to the juicy flesh inside. Lucky kids, eh?

Petrol prices in New Zealand

Oil prices are going up and are going to badly affect everyone in New Zealand. I read an email from someone who I think lives in the USA, and there petrol was US$3 a gallon. Want to know what it is in New Zealand? Well I can hardly keep up with all the increases, but currently 91 unleaded petrol is just under NZ$1.71 a litre, which is NZ$6.48 a gallon, approximately US$4.08. So don't complain if you are an American!

According to BP, 43.6% of the price of petrol in New Zealand is TAX! I wonder how that compares to the rest of the world???

Huhu grubs in the Ngunguru beach sand!

Ever seen a huhu grub? I haven't, but I've seen them on TV. They are supposed to be found in rotted logs. You can eat them raw or cooked, although I haven't done that either.

So imagine our surprise when we were digging in the Sand at Ngunguru beach the other day, and found a huhu grub! Happily alive, living in the sand. So we kept on digging, and found 10 more, before we decided we had enough. We planned to bring them home and cook them, but during the course of the next hour or two they started turning black so we decided against it. I guess you're supposed to cook them straight away.

I took a photo, just to prove we had really found huhu grubs!

Armless man caught driving car

Now here's an interesting story from New Zealand....the other day a man was stopped on State Highway 2 at Papamoa ( Bay of Plenty) cos he was 21km/hr over the 100km/hr speed limit. The officer approaches the car and sees that the drivers seat is reclined and the guy has his foot up on the dashboard. He's thinking,this guy is acting like a smart alec. Then he notices the guy has no arms!

This fella has been driving for years with no drivers license, using one foot to steer and the other to operate the pedals. Apart from the fact he was speeding, I reckon he deserves a medal for guts, having the Kiwi can-do attitude, and simply having the dexterity to drive a car with no hands!

Newsletter ready, ISP isn't

Having finally put together the March newsletter ( better late than never, eh?!) my ISP is having problems receiving and storing emails, and just cannot cope with taking my newsletter. Darn it! Hopefully the problem will be fixed quickly, so I can get this newsletter out. So much work goes into that newsletter, that it's this huge anticlimax when I can't actually send it!

There's lots of local interest in the Merino Possum yarn, so I'm enjoying the thought of seeing lots of Tutukaka Coast people sporting warm woolies this winter. We're experiencing the tail end of the cyclone that hit Australia earlier in the week, and there is a bit of a chill in the air. I spoke with one delightful local lady and mooted the idea of a Stitch 'n Bitch group being formed. We'd all get together with our handcraft projects and have a fun night....might even get some knitting done....

Due to the problem of not being able to get the newsletter out today, I've had to turn to my stock of Cadbury Creme Eggs for solace. They are such a comfort on a cold Friday afternoon when the day has gone to poop....but it's alright Maureen, your order is safe. :-)

I knitted the Merino Possum Yarn

Well I got out the knitting needles that had been laying dormant for oh, about 20 years, and knitted up a piece of the Merino Possum yarn. I was rather proud of myself that I still knew how to cast on stitches, although I must admit I had to consult the internet to find out how to cast off!

Where would we be without the internet these days? I don't think I have a How To Knit book, so without the internet that piece would still be sitting on the needles until I got to the library to find a book.

Anyway, for the technically minded, I used size 4.5mm needles ( about a US size 7?) and ended up with about 20 stitches, 26 rows in 10cm/4 ", which is what is recommended. Although the band around the wool says it is 8 ply, it is actually 10ply and you should buy patterns accordingly.

I love the feel of the work - it is soft, warm, non-prickly, and lightly fluffy. I've taken a close-up shot of my work and I've lightened up the picture ( I WOULD use the black yarn) so you can see the stitches. In real life, the piece is jet black. What might look like spots of dust in the photo is actually light reflecting off the possum fur - it is smooth and hollow so it shines a little.

I may just graduate on to making a hat or a scarf....probably have it finished by the start of next winter!

Little Blue Penguin in Ngunguru Bay

Oh I'm a lucky girl....although it's autumn now, the weather and sea is still warm, so we went over to the beach to have a swim. The tide was going out and there were many shoals of sprats swimming around in the shallows. Then lo and behold, along comes a Little Blue Penguin chasing the sprats like crazy, right into the shallows, gobbling them up! It was so exciting! We knew these penguins live around here somewhere, as we've seen a couple of dead ones on the Ngunguru Sandspit. But never a live one, and not one swimmming in close proximity. This cute little penguin wasn't terribly concerned that we were in the water, and actually swam right up to me.

This is another reminder of how cool it is to live at Ngunguru. Just last year a group of dolphins came into the river and the whole school, plus a dog, got into the water to play with them. My daughter , Sophie, got to touch one of them. The young ones came right in amongst the kids, while the older ones stayed out in deeper water, doing great leaps. A pic is below. Maybe I'll get a photo of the little blue penguin one day too. :-)