Wednesday, 30 September 2015

where have I been? why have I not written this blog?......

Where have I been? Well the answer is right here in West Yorkshire fluffing about making wind turbines and reusing junk to make more stuff, that is where.
I am still out and about on the van......though not with Sally and Monza the dog so much now. It is more small jobs locally now.....and I have a new helper.....
My new guy is much fitter than I thought. And dare I admit it fitter than me at the moment.
Yesterday Sally and I went to Chapel Allerton hospital for my check up. I have rheumatoid arthritis, which was discovered about five years ago. I spent about a week crawling around under the van trying to fix it up to get through an M O T test. This made my feet hurt and I started to hobble around like an old man. I could not even get up stairs.......which was a real pity as this is where the bathroom and bedroom are.
All eventualities were gone through at accident and emergency, and with repeated GP visits, until I was referred to a foot doctor with a fancy name at Otley hospital.
The appointment here was spent with me hobbling about and the doctor crawling around me observing. His conclusion was that I had a corn, and that I needed insoles, that I should be tested for hang on mate Henry V111 had this still around today? Then he really hit the nub of the problem......he told me there was a new blood test for arthritis and that I should go to my GP and request one......just to rule that out as well the doctor said....

This I did. And fortune was on my I saw a locum, just out of medical school....therefore well up on all modern developments.........I went for this blood test...eleven fail s of blood were taken, I watched mesmerized as it pored out of me from a tap.......even the nurse had not heard of this test yet. I was lucky, kinda in the right place at the right time speaking to the right people, otherwise I possibly would never have found out.
So the results came back, and I went to visit my GP......and to everyone's surprise it was rheumatoid arthritis, and I carried a whole selection of inherited antibodies, genes and all types of things that really excited the GP......I have a rare kind to cut a long medical paraphernalia short. This was how I came to be referred to Professor Emery at Chapel Allerton hospital. The same day I found a newspaper with his leading light of research on the front page. I was besides myself with glee........not because I had! Because it had been diagnosed and I was going to be treated by a professor who had made his life work researching and developing new treatments. Luck was on my side at last.
After this I went to the hospital a lot, as I was added to their research programme. This in evolved a lot of blood tests, being photographed and scanned from every angle , testing meds combinations, and one appointment I had Five people all shaking their heads and staring at me in disbelief.
That day there were two nurses, two doctors and the professor himself. they had discovered my heart defect......something I was born with, and has never bothered me....up to that moment....and my wife Sally had told them how much I smoked and drank. The medical profession wondered at the fact that I was alive......
Anyway I was put on a very new drug called Etanacept. I can tell you....I felt the effects of this immediately...... a nurse showed me how to inject myself......

My next appointment was full of my symptoms. had disapeared.........and ""fixed" was written on my file and the magic meds were delivered to my house by courier
Lately, I have not been so well. My hands and feet have started swelling up and the pain is back. My visit this time was not so gleeful.  So basically the wonder meds no longer work on me and my arthritis has developed another way of attacking my body. A change of medication is required. This time I to have a six hour infusion of a completely new treatment. Six hours in hospital! Before this I have to stop this current med.
sally and I drove home really upset. It goes like that sometimes.

April 30th 2016......An update

Sadly the new meds did not work. I have more infusions planned for May 2016 and I am told by doctors that the second time often has more success. So I can only hope.

Now on to. here is a link to my website. Rusty the van passed his MOT test the first time this
year and is out and about with a new driver called David. His usual job is an artist. He also loves cars and mechanics and makes modles of cars and driver of rusty the van this comes in very useful.

The business is just the same, as my wife goes out with David as an "extra pair of hands".
/     and here is a link to my facebook page.

1 comment:

  1. I felt so hopeful at the new medication.....such a drag that it's effects were not lasting.... praying for more medication that will work.....