I’d half typed up an entry for the start of the week, but I have been working on a few things which have prevented me from finishing it. Probably just as well. I wrote about what I thought was a flare up…. which wasn’t. I was told at my review today that my dizzy spell and abdominal problems were just a virus. Just a virus….
It was my first appointment at the outpatients clinic rather than at Endoscopy and it was all pretty positive. My weight is no longer seesawing…. I have put on 3kgs. I personally don’t see this as a good thing but my doctor was over the moon. He said that when the disease is active, we expend double or sometimes triple the calories we would normal in fighting it off. So that leads to the cycle of putting it on in the quiet times and stripping it off during a flare-up. I think for about 6 years now I have been bouncing between as little as 48kgs when the disease was very active to comfortably about 60kg when it was more dormant. I got very good at hiding my seesawing weight. So I guess I am going to have to watch the amount I am eating a little closer since I am not saving it for a rainy day anymore – well hopefully.
It seems I am also carrying a bit of fluid which I shouldn’t be… the Entocort has that property. He pointed out my slightly enlarged hands and feet as well as the part of my widening waistline which was from fluid retention rather than weight gain. He has reduced my dosage to 3mg or 1 casual per day. Over time the fluid will disperse.
We talked about a few things actually. One of the things that came up were my bloods and whats going on with my Immune system. Dr E mentioned that the levels of the Azathioprine are quite high in my system – not emergency Will Robinson, go to the A&E. Just… higher than he would like… so he reduced my dosage back to 100mg of Imuran. I must admit even though I have no idea clinically whats going on, I am more comfortable with the slightly lower dose – not to mention the financial break, which I will talk more about a bit later.
I have been having a bit of a dive in appetite lately – which I would have to say is a good thing considering my new ability to put on and retain weight. Thankfully I remembered to talk to my doctor about this… seemingly harmless occurrence. If I have learned one thing – nothing is “harmless”. He believes that my reduced appetite is due to my dosage of Imuran being slightly too high. It should be corrected over the next few week – just in enough time for me to eat myself to death over Christmas… Bah-humbug.
So on April 28th this year – my medication costs were at a rather scary $350 a month, in August that came down to a managable $92.50 a month… and now its only $33.30. How things can turn around in a relitivly short time.
Today marks one year since we have been in the house… we have dubbed it the year from hell. Its been plagued with money problems, bank problems, personal problems, health problems and much more. I am glad to see the back of what was meant to be one of the happiest and most fun years of our lives. Yeah right. Instead its been one long lesson in sacrifice and subsistency – a hole we are hoping to start crawling out of.
I attribute a lot of the improvement in my health to the drugs and the treatment – sure they have played a large roll in but they are not the be all and end all. To make this work I have made a lot of changes in my life. I started eating right. I stopped skipping meals and started eating the right foods. Good foods with low fiber content. I have been eating the food I should be eating, not the food I want to be eating… I mean… I no longer skip the dinner part and go straight to dessert. I stopped my habitual anti-inflammatory and pain killer popping. Not because it was nice, and not because I wanted to, but because it was the right thing to do. The short term sucked and I felt like I was being sucked into a big black hole of pain and desperation before my Crhons medications started to work and before I found better ways of doing things that didn’t include be being drugged to the teeth and chasing all that with a glass of bourbon… and exercise.. Yes, exercise. I know I have been putting on weight, but I have been exercising a lot more too… at least an hour a day, and I feel better for it… It added to my pain at first but now I am finding everything so much easier… its strange.
So hears to my ‘almost’ remission, hears to the end of the year of hell, and hears to me… doing whats right, not because its easy or enjoyable. But because its right and because I want to feel as well as I can – for as long as I can.