I’ve been a bit quiet this past week. I’ve had a lot going on. We spent the weekend in Melbourne doing photo shoots for TV Week (I’ll let you know when those are printed) and then I was supposed to be going to a ball, but I have been unwell…
Those that have read my blog for a long time know I struggle with crohn’s disease. I have recently lost 13 kgs due to The Block, crohn’s and not being very well.
On Monday I started on a drug trial for my crohns. There are only 2 other people on this trial in Melbourne at St Vincent’s Hospital (where I go). So I have been testing and trying to qualify for this drug over the past month. The reason I am on this trial is because I have no other medication left available to me. I have done it all over the past 16 years and I either have reactions or no results from PBS approved medication.
The hardest thing about a trial is that I had to “fail” certain targets to qualify. This meant I had to be sick to get it. So instead of trying to get well for the last month, I had to stay sick. With this massive crohn’s flare I have been experiencing, I have suffered from odema in my ankles (which started in master bedroom week on The Block), ulcers on the back of my calves (which started this same week) and arthritis (this started after The Block finished about 6 weeks ago). So I have been battling and feeling awful for months.
I had a steroid injection in my ankle 2 weeks ago and that is slowly improving. I have been at the dermatology clinic at St Vincent’s lots over the last 2 weeks for the ulcers (I can’t take medication for these because of the trial) and the arthritis is only being managed with panadol.
If you know about trial drugs, you’ll know that I only have a 1 in 3 chance of actually receiving the drug. So for all I know I could be receiving the placebo drug and I have to stick with it for 12 weeks. Then I’ll be re-assessed. There are a lot of unknowns in a drug trial. If I remain as sick as I am and continue to lose weight, I’ll have to come off the drug.
The reason I write about crohn’s is because it’s a disease that either no one talks about, or knows nothing about. To look at me, I am fine. I am positive and happy, yet I spend my life looking for toilets…
How did I survive The Block?