My first post of 2014 should have been the last of 2013. I have changed what I was going to write as a month ago I was angry, Incredible Hulk kind of angry, except I was red from psoriasis instead of green. I was afraid that if I wrote then it would be nothing more than a rant and possibly even abusive.
After the debacle of last year’s hospital referral I was left feeling rather down, annoyed, angry, frustrated and lost. I had to come off my medication as it was starting to become too uncomfortable even though it was maintaining my condition at a certain level. It wasn’t getting any better though. I tried a few other things, mainly emollients and moistruisers and whilst my skin wasn’t too sore, more patches of psoriasis were appearing by the day and still are.
As we got close to winter and Christmas things were getting worse, I tried new medication which only had the result of making my skin red raw and ready to crack open at any time. Sitting down, standing up, laying, it was all painful and sore. Things were so bad that I withdrew from life to a degree. I decided not to go to a few sociable events, well actually unless it was a family thing I didn’t go anywhere. Every step was such an effort that by the end of a working day all I wanted to do was go home and sleep. I only medicated as I knew I had to, the pain of putting cream on my skin was at times unbearable. It got to the point that painkillers were the only way to get me to sleep. Christmas was close and I was in danger of becoming a real Scrooge.
Now here we are in 2014, Psoriasis is still covering more of my skin and I have to stop avoiding it. I felt so let down by the people who are supposed to treat me that I left it too long to go back, still angry with them, not wanting to talk to them. With some intensive self treatment my skin looks better even though the joints are still sore. So with a deep breath I rang the doctors and made an appointment, determined not to be referred to the hospital. This time I have be referred to a GPSI (GP with Special Interests).
I only learnt of GPSIs at an event at the Royal Society of Medicine last year. The person I have been referred to has worked in dermatology for many years and possibly knows more than many consultants. The added reason for seeing a GPSI is there’s no agenda. They do not have hospital waiting lists to consider or cost of treatment under the hospital. I am feeling more positive about this than going back to the hospital as I hope there will be more discussion and thought about quality of life rather than how much of my skin is covered. It will be interesting to see what happens.
There is another option which both me and my GP considered and are sceptical of. The choose and book system is supposed to allow you to choose any clinic. That means any clinic in the country and not just your area. I know of a very good clinic London which I should be able to choose. Last time I was referred I was only given three options, two of which are run by the same consultants. There is thought to be a lot of opposition to this which is why you only seem to get a limited choice. If I do need to go to a hospital clinic again I will try this and will push to get the clinic of my choice.
So that’s where I am, waiting again to see someone else about my skin, pondering on the next step and desperately seeking the way out in the maze of psoriasis.