There is a drug Called Remicade/Infliximab that is used to treat Crohn’s Disease and Ulcerative Colitis. Currently it is not on the PBS (Pharmaceutical Benefits Scheme). Meaning that if you get to the point of having to use this drug as a last resort before surgery or to try to close a fistulae, you are looking at $1,006.25 per infusion (the vial is a measly 100mg).

Many, many sufferers of Crohn’s, U/C and even rheumatoid arthritis have been given a second chance at a normal life with the use of regular Infliximab infusions. Unfortunatley, how many of us can afford it? They say that you put no price on your health, but the sad fact is, that if you don’t have the money there isn’t a whole lot you can do about it. This drug is used to to block a certain protein called tumour necrosis factor-alpha (TNF-alpha) in people with autoimmune diseases. (TNF-alpha, when produced in higher than average amounts, causes imflammation within the intestinal tract, leading to damage to the bowel walls.) It is a godsend for people who can tolerate it and one-third of patients treated with infliximab achieve remission of their disease.

There is a petition on www.infliximab.org that us Crohnnies and U/cer’s have been putting our names to, screaming to have Infliximab put onto the PBS. This support of names will be given to Health Minister Mr Tony Abbott, in hopes that he will gain an understanding of how important this is.

I do not have to take this drug right now, as my Crohn’s is controlled with other medications, but that is not to say that I may never need it. If that day comes I hope that this petition will have had its desired outcome. Its not fair that it seems only the rich can afford this drug.

Please support us, sign your name!!

So it would seem that I have chosen my first post to be on a topic that is somewhat more closer to home. Ok, its all about me really!

Sometimes something will happen to me and I think..”I am going to put that in writing.” Mainly I mean to complain to the big guns, the makers of the product I am unhappy with or the boss of an organisation where a minion has annoyed me. It’s actually a bit of a running joke in our house, where if someone is upset, it is put to them that they should just put it in writing.

No one really cares though, hence I never get around to actually doing it. Well, now I have an medium to help me get it out of my system…I plan to do just that.

I drink Lemonade. I drink alot of it. I enjoy it, I love it, some would say that I am addicted to it. But as I’m sure many of us Crohnnies and UC’ers will attest to, it’s more than that..it’s somewhat medicinal. Crohn’s comes along with awful nausea and lemonade has saved me many a time from driving the porcelain bus.

Theres something to be said for loads of flavour with a bit of a fizz. Yeah alright, so it’s all liquid sugar, and of course it doesn’t claim to be much more than that but heres the kicker, I only drink two kinds. Schweppes during the day to keep me going and Sprite at night..(Sprite is sweeter for those who don’t know, kinda like a dessert wine, in a strange Jade way)

Anyway, my dilemma is with the lids on the Sprite 1.25 ltr bottles. Once you have opened that lid twice, the majority of the bottles after that will get stuck. It doesnt matter if I wind it on real loose (that just ensures that my third glass will be flat) or at a normal strength, it always seems that on the third go, the lid won’t budge!

My poor husband has been made to get out of bed in the middle of the night to open it for me as I have stood there for five minutes swearing and
sweating trying to unscrew it. Its all very well to have a strong fella on hand to help, but he is leaving on a business trip next week. Am I forced to change brands?

I can’t very well feel ill and then have to fight that lid to guzzle down my anti-nausea nectar. This may mean nothing to the normal person but as I have mentioned before..this stuff is like gold to me.

So apart from The Coca-Cola Company offering to supply a Hire A Hubby for a week (just to open those lids) while mine is away, there is nothing I can do but switch brands. I will be taste testing “night time” lemonades this week and will be sure to let you know the outcome, as I can only imagine how cutting edge this is.

Perhaps I need to stop drinking Sprite altogether. This is some information I stumbled over:

A couple of schools had their grade 5’s involved in a Science Fair and the objectives of the assignment were sent home to parents. There were certain experiments that the kids needed to do. Some of those experiments involved..yes you guessed it Sprite. This frightens me in a “Weird Science” kind of way.

The experiments tested:

- Which type of liquid (tap water, distilled water, salt water, sugar water,
Sprite) will cause the most rust to form on nails over a period of 2 weeks?

- Which type of liquid (tap water, distilled water, salt water, sugar water,
or Sprite) will cause a sweet pea plant to grow the most?

- Which liquid (tap water, distilled water, salt water, sugar water, tea,
coffee, or Sprite) will allow yeast to grow the most in 2 hours?

Yeast??? I don’t know the outcome and I certainly do not want to try this at home because quite frankly, I’m afraid the conclusion will be Sprite.

Maybe I should just switch to water??