I was on Oprah

Well, it happened, Oprah came to Sydney and here I am on her show:

That’s me behind her in the white cap. It was one of the most exciting days of my life. Can you tell how excited I was?!

 

Facebook: http://www.facebook.com/pages/Oprahs-Ultimate-Aussie-Fan/154790214540459

Website: www.hasmyhaloslipped.com

Oprah here I come

Well yesterday I had an iron infusion as it seems I am a tad anaemic. This is possibly caused by being on Warfarin and menstruating. Very heavy and long periods close together = low iron.

Kerry wasn’t available to insert my cannula yesterday so Helen tried and then she managed to get some poor sucker who had never seen me before to give it a whirl. And he got it on his second attempt. Thanks Anthony. Great job!

Anyway enough about my body and bleeding and blood, on to more inportant things: I am on a mission to see Oprah in Sydney.

So for more info about this quest and to help me get Oprah to notice me go to:

• My facebook Oprah’s Ultimate Fan page http://bit.ly/cMpY7m
• Or my blog http://oprahinsydney.wordpress.com/

Like, Share, Comment, Tweet. Any help greatly appreciated.

Thanks so much

Nic(ole)

Virgo

According to my horoscope / stars by Yasmin Boland in yesterday’s Sunday Telegraph my new mantra as a Virgo is:

“My life is on a restart and I feel better everyday”

And I couldn’t agree more.

I can’t believe it has been so long since my last post. I guess my platelets haven’t been such a big issue, though I was still having weekly blood tests up until about a month ago. Then down to fortnightly and now I have three weeks since my last to my next visit to Jenny my haematologist.

Two weeks ago my platelets were 293 – just 7 off me having to buy drinks for the entire team at HACU. Worth every cent. They (as I have said many times before) amazing!

My lowest platelet count was 7. My highest 293.

I have still not had any aspartame or other artificial sweeteners and nor do I intend to. It is simply not worth the risk. I cannot say categorically that giving up diet soft drink is the reason that my platelets started to go up, but nor can I say that it isn’t the reason. I don’t want to go through that hell ever again so I have no intention of ever having diet products again.

It is tricky though – when I order a coke I am frequently given a diet coke and this is completely understandable as I am around 20 kilograms overweight so one would assume that I should be drinking diet products not the full strength 11 cubes of sugar in every can soft drinks. I have to make it clear that I have a deadly allergy to aspartame – which I believe I might have.

No proof of this of course. I just gave up my 3 or 4 cans of Pepsi Max each day at around the same time that my platelets started to go up. I must emphasise that I had also had the following treatments for my ITP (Immune Thrombocytopenia / Low Platelets):

• 90mgs of prednisone daily
• Rituximab / Mabthera
• Treatment for Helicobacter Pylori
• Dapsone
• Octagam / IVIG – Intravenous Immunoglobulin

So it could well have been any one of the above or a natural remission but like I said I won’t be touching aspartame (or any artificial sweetener ever again).

Current daily medications:

• Prednisone 10mgs
• Dapsone 50mgs on alternate days
• Folic 5 mgs
• Potassium
• Warfarin – usual dose 3mgs per day with aim of INR between 2 and 3
• Panadol / paracetamol PRN (when needed or Per Required Need
• Digesic – also PRN

I have just recovered from a 5 week bout of some bug / virus. I did have fluvax including swine flu so am assuming it’s neither of those. However I don’t recall ever being so sick. I had ear infection, mouth ulcers, headache, sore throat, fever, sweats, cough, phlegm, clogged sinuses (I have no idea how any one persons body can produce so much phlegm / snot – incredible!). I was coughing so much it seems I even broke a rib and pulled some muscles / tore ligaments etc – very painful.

BUT now I am feeling so much better. I now have a bike well it’s a tricycle actually, designed and made for people with disabilities and balance problems. I love it – I can’t go far, I can’t go fast but I can actually pedal a little and sure it makes me ache but it is worth every minute of pain!

An enormous thank you to Concord Sport and Bike Shop in Concord NSW Australia for getting it in and bringing it to my home for me to try out with no obligation. Then for coming back and fitting a mirror and the hamburger bell Ben and Soph gave me. It’s a Gomier Adults Tricycle and it is fabulous.

Now my cold etc is over and my ribs aren’t quite as sore and spring has sprung and the weather is warming up, I am going back to the pool to walk a little, move a little and stretch a little.

“My life is on a restart and I feel better everyday” Yasmin Boland

Until next time

Nic(ole)x

www.hasmyhaloslipped.com

Wine, whitney, george and a cold

It’s been a while since my last post and some of you out there have thought that might be a bad sign but no, I’ve been (and dare I say it in case I jinx myself) doing really well.

On the 2nd March my platelets were 134 and today they are 161.

They are trending up which is nice and I might even call it a remission. I might.

Today was a good day at Hacu, Kerry did her usual splendid job of getting my blood out of the stone they call my veins and I was called in straight away to see Jenny my haematologist. She had a med student with her who was nice, confident, friendly and told to go and research basilar invagination. Jenny showed her my scar to give her a hint about which part of the body she should be researching. And no, for those of you who haven’t read my book (the still unpublished book, sadly) Has my halo slipped (Or do I have a screw loose), it didn’t require me to take off my pants!

So my update is:

• No warfarin yet as I have a cold
• Need to bring in a sputum sample (an early morning gross one – I’m gagging as I write this, I just can’t “do” nor talk about sputum. Errk). To check for any bacterial things that might be happening due to prednisone etc.
• Must remember to take my Coaguchek machine with me next time so they can remind me again on how to use it.
• Continue taking Dapsone, stay off Aspartame, back in 2 weeks to go on Warfarin – maybe
• Current meds: Prednisone 10mgs, Dapsone 100mgs, Clexane 80mgs, Folic 5mgs, Nexium 40mgs, Slow K (can’t recall the dosage but it’s 4 tablets per day), Digesic or panadol PRN, amoxycillin 3 times a day, no aspartame
• I started a healthy lifestyle last week and it lasted until I had a glass of bubbly on friday and then I confused two reality tv shows, Biggest Loser and Masterchef. I’m following Michelle Bridges (Biggest Loser trainer) diet plan (well loosely following it, as in I bought the book and read it) and on Saturday I inadvertently found myself with a lucky parking space right out the front of Adrian Zumbo’s (the croquembuche and mousse cake chef from Masterchef) patisserie in Balmain and thought it was a sign. So bought a divine lemon tart and an apple turnover (I did share them with Mum!!). Reality TV is doing my head and my waistline in. I think I need to be stranded on an island with a fishing line and a flint
• Enjoy food and wine festivals

The last point is relevant because once I go back on warfarin I have to more carefully monitor what I eat and drink as warfarin is affected by food and alcohol.

By the way, I watched Whitney Houston die a slow death on stage and then George Michael saved the week of concerts in Sydney with a stupendous performance that would’ve simultaneously lifted the roof and brought the house down had it not been outdoors at the Sydney Football Stadium on a glorious and balmy Sydney night.

Until next time

Nic(ole)x

Celebrate good times come on!

I am feeling a little pressure; I found out today that some of the HACU staff have been browsing my blog.

It’s okay when the people who know you, and know you can’t write, drop by for an update, but when people you respect (not that I don’t respect my family and friends!! don’t get me wrong… please. ..don’t) read your ramblings it leaves you feeling a tad under pressure to write something worthwhile, something well written.

So that’s what I’m going to do, soon…one day…

In the meantime my platelets are 194 today. I don’t think I told you that my last test result (two weeks ago) they were 141 – a drop from 201. But now, they’ve gone up again, not quite to the 300 required for a fine wine experience with the HACU staff, but getting there.

Woo bloody hoo I say. Woo bloody hoo.

I don’t go back for two weeks and don’t start Warfarin until I go back. I am being given a break until I have finished enjoying summer (translation: drinking far too much to allow the proper and easy regulation of my INR and Warfarin). And I have to say I am truly taking advantage of this time.

Cocktail hour

It’s cocktail hour – my platelets are 201 today.

If they reach 300 I have to take all the HACU staff out for champagne apparently.

It’s the least I can do!!

Another drink?

Ten days in Noosa eating and drinking and swimming in the sunshine seems to have agreed with my platelets:

Today they are 179. Yes 179.

It may be the cocktails?

It may be the wine, the really fabulous wine: Leeuwin Estate Art Series Chardonnay, Cloudy Bay Sauvignon Blanc, Huia Pinot Gris and Sauv Blanc, Scarborough Chardonnay, Petaluma Chardonnay, Dog Point Sauv Blanc etc etc etc etc etc etc ETC. Or it may have been the Caprioskas, the Pina Coladas, the Cosmopolitans, or the Ricky’s fizz I drank.

Or maybe it’s the Aspartame I no longer consume – did you know that Berocca has aspartame in it? No, nor did I until I needed one after a Cocktail Crawl through Noosa:

We started at Aromas, next headed to Sails then finished at Ricky’s.

Just a few dining tips for Noosa:

NEVER EVER no matter how hungry you are go to Rock Salt. Just don’t do it. It claims to have won Best Byo in Noosa however I suspect it is because there are very few BYO restaurants in Noosa. The pasta wasn’t cooked and the brownie was burnt. The chef / owner disagreed with my sister the chef and my brother the foodie when they sent their pasta back – “that’s the way they serve it” – nice huh? And when the brownie was returned burnt the chef said he tasted it and it wasn’t burnt. It was badly burnt. As if a Bradshaw would ever send chocolate back!! The arrogance of the chef was extraordinary, if he had the skills to back it up that would be ok. But he doesn’t. Don’t waste your time eating there. Of course this is just my opinion, but I do eat out a lot and love my food as the scales showed me very clearly this morning when I hopped onto them.

Now for some dining experiences you MUST try in Noosa:

Wasabi Japanese was the best Japanes we have ever had.

Rickys River Bar and Restaurant – fabulous as always.

Aromas – just great for cocktails, chocolate eclairs, breakfast etc

Sails – lovely location, amazing wine list and pretty good food.

I’ll go now and have a swim and do an assigment and work out my diet plan.

This is MY DAY, MY WEEK, MY MONTH, MY DECADE. And it is going to be AMAZING!!

PlateLOTS

Fifty nine days since my last infusion of Octagam (IVIG) and my platelets are 104 today.

Still had no Pepsi Max nor aspartame, am still on Dapsone and folic and prednisone and nexium and clexane and bactrim and slow k and panadol and digesic and mona vie and..?

Still have my spleen.

Still eating too much…far too much…

A Happy New Year

My platelets are 103 today so it is going to be a Happy New Year or else!!

Santa Claus has come to town!

He sees you when you’re bleeding

He knows when you’ve put on weight

He knows if you’ve been sick or tired

And he knows… how to whip your platelets up into a frenzy of 100 plus numbers!!

My platelets were 108 yesterday – yes ONE HUNDRED AND EIGHT, and to top things off with a card and a bow, they reached that level without an infusion of Octagam and it was 44 days since my last infusion.

Could it be the Mona Vie? Or maybe the fact that I have stopped drinking around 4 cans of Pepsi Max and all the aspartame that provides each day? Or maybe it’s the Dapsone or the Mabthera or maybe I’m just going into remission?

Who knows, who cares?

Happy Christmas to me.

Merry Christmas and a fabulous, fun-filled, happy and HEALTHY 2010 to everyone.

And now to do that last minute shopping.

love

Nic(ole)x