Yesterday was the official One Year Anniversary of my Crohn’s Diagnosis. I didn’t notice until then – but I started my Imuran again last night – coincidence or synergy? You be the judge.
How do I feel…? I like I am over worked and under paid! Oh, about Crohn’s. Er…. it sucks. But yesterday was just like any other day for everyone but me. I thought a lot…. a reflected some… I worked on a logo… Oh, that really has nothing to do with it – but seeing as I did work on one…
Am I glad they found it? People keep asking, expecting me to be unendingly grateful that I know whats making me sick…. But all it really did was end years of frustration… knowing didn’t really… help my cause? I am medicated now, ad the medication isn’t always the blessing they make it out to me… but my bowel has obstructed less in the last 12 months – substantially less. In the last 12 months from today…. my bowel has obstructed twice…. where as before it was obstructing every 3 weeks. But am I flaring less? I really don’t think so – now its just a normal run of the mill flare rather than a “kick arse, see you in hospital” flare. Am I more “well” than before? It depends which part of it you are asking about. My joints…. a problem I have had for over 10 years… they are a lot better on the Imuran… in fact I have been suffering for the last two days while I have been off it…. My skin – complete and total mess – and yes I can honestly say I have tried EVERYTHING… (yes that includes, Emu Oil, Paw Paw Cream, Steroid Cream, Non-Steroid Cream… in fact every different cream on the market today). Nothing works because its not actually m “skin” I need to be treating… its a throw back from the disease, my skin is just a symptom… The more stuff I put on – the more infected my skin gets…. My abdominal pain is less severe, but still there…. My other bowel problems – persist.
Am I better off – sort of? That’s the best I can give you.
Mentally, the last year has taken a toll on me. Its amazing how many people don’t want to be your friend anymore when you are sick…. the only person who truly understood is Ross. We have talked at length about it… and he said the same thing happened when Maz got sick…. Neither of us know why really – we have theories…. All I want to say in the sick peoples defense is… you can’t catch it people!
I have forgotten to talk about a few things lately… my petition for the subsidize of Entocort was rejected… in a letter that said “… please advise Amanda that there are cheaper treatment alternatives on the market which are covered by the PBS.” Thanks for that fantastic information “normal” person. I don’t suppose you happen to know that the only real alternative to Entocort is Prednisone? I don’t suppose you want to know what that does to you? Take a course and see for yourself! I have met one good politician but the others who have been involved with this seem to be self righteous dicks. They have no idea what its like to suffer this disease. Entocort is a better, safer steroid. It is far better than the Prednisone…. and if they had of bothered to do their research they would have figured that out…. Fuck me. Anyway Dr. E and I spoke about Entocort last time I was there – I asked him if I was stupid going for the more expensive drug that initially nearly sent up to the poor house… he said I wasn’t. He also said that in February, the company that makes Entocort lodged the application for PBS…. after a politician had brought up the case of treating Chronic Illness with the best medication available – not necessarily the cheapest. I sat back in my chair. So the lodgement has been made but it can take up to 18 months… at least its the start of common sense.
All chronically ill people should have access to the best medication at a price they can afford… after all – aren’t they, sorry, aren’t we, suffering enough?