I love to follow blogs. One of my favourite is http://www.smithellaneous.com/ This is a family that has had it very tough with illness but is very religous - JOYOUSLY religious and completely family,family,family. Jealousy is a sin I believe but I look at that blog and I wish I was part of that family. They so have each other.
Nowadays family is something to be proud of. If you have one, hang on to it.
Friday 13 August 2010
Monday 9 August 2010
Job Description
Some things just aren't in the job description! Spent the morning organising to get dog poo removed from a field! Then set about covering bins for collecting milk bottle tops which I am *determined* will make the charity some money.Arranged to invoice companies for various adverts, then worked on a health and safety report about whether or not we can legally sell home cooked food to raise money and am looking at the mobile every five minutes to see if a message has come through that another baby has been born into this mad family. All in all, a good day so far!
Friday 6 August 2010
Livers
The liver is the lunatic genious that lives in us all. Treat it well and it will return the favour. Mess with it and it will kill you and make you suffer like you wouldn't believe possible first.
I've been reading "Me and My Liver" (http://barrump.blogspot.com/) Actually I read it from beginning to end in one hit. In a nutshell, end stage liver disease, disease progression and death. Lots of sadness.
But if you haven't seen anyone die of liver disease would you know what it was like? Everyone has a kind of feeling they know what looking at a heart attack is like. We appreciate the general wasting of cancer, the awful slowwwww demise with alzheimers. But the liver...well, you go yellow don't you?
When, after several false starts (oh its food poisoning, no it's a stroke) we finally had the diagnosis of end stage liver disease I had to google it! Mainly I have to say because I couldn't understand the doctor telling me my husband was going to die.
I have to say I was very sceptical. Because Ron had *so many* things wrong with him I couldn't believe we had reached "end stage" anything without someone noticing. He was treated for MS. COPD. Diabetes and MRSA, so we were nooooo stranger to the hospital. In 2003 it was noted Ron had "Slightly elevated liver levels" and that was all that was ever said.
But here we were, shoot forward to 2006. It was June 24th. Family BBQ. Ron had had a drink - not a lot but was acting like the most drunk person in the world. We got him home, checked his sugar levels, nothing major there. But he went down hill and ended up in hospital...then we went through the stroke / poisoning routine / wait and see. Within about 24 hours he was shaking, like he was cold and kept closing one eye to focus to see. Then a terrific pain hit him like never before. Test upon test...inconclusive except for "Liver involvement". Then it happened. The liver turned on him. He shouted "I am not dead" "You cannot bury me". He shouted it over and over and over for twelve solid hours. The lights in the ceiling were spying on him, and so apparently was I. The nurses were trying to kill him, the other patients were spys. He wouldn't eat or drink. He couldn't control anything about himself. Then...he calmed. They cathaterised him and inserted a feeding tube. The calm lasted all of a day.
I stayed with him all day every day for five weeks. I walked in one day to learn he had ripped out the catheter and the feeding tube and was in a manic rage. At some point along this five week journey I was told this was end stage liver disease, there wasn't a lot they could do but they'd try. With loads of lactoluse they achieved periods of lucidity but it was hopeless. His hands would start to flap, then his legs. His eyes would go like tiny pin pricks as the madness desended.
On July 26th I was taken to one side and told this was it. End of the road. Take him home. I don't know what drugs they had him on, but he was calm and lucid. We renewed our wedding vows that afternoon.
It was strange to see all the monitors being taken away, no three hourly finger pricks to check the sugar levels, no pulse checks, no blood pressure, no daily draw of blood. In a bizarre way I felt we were making progress, this at least was humane. So much of what he'd gone through in the last few weeks was far from that.
He drifted, confused, scared, lucid, confused, scared...at one point he asked me what was wrong with him. I was honest.
He came home on Friday. He was conscious, quiet, drifting. Miraculously he held it together long enough to see his son from Canada. We talked but didn't talk. He was beyond the big talks, there were lots of I love You's. On Saturday things changed. He finally started to go that dreadful, awful colour I will always remember and always hate. He was in pain at the slightest movement. And then he began a monologue, a rambling diatribe about maths and mathmatical formula. If anyone dared interrupt him he had to start again. Hours and hours and hours later, he drifted asleep.
Our wonderful angels from our local hospice were in and out the whole time. At some point over the weekend the morphine pump went in and as it did, Ronnie really wasn't there any more. After weeks of turmoil, shouting, screaming, needles, tests, fear and nightmarish visions, my Ronnie went quietly, very quietly into whatever comes next.
If I hadn't seen it with my own eyes I would never, ever have believed that the liver could turn on a person like that. I wouldn't wish what Ronnie went through on the most awful person on earth.
I've been reading "Me and My Liver" (http://barrump.blogspot.com/) Actually I read it from beginning to end in one hit. In a nutshell, end stage liver disease, disease progression and death. Lots of sadness.
But if you haven't seen anyone die of liver disease would you know what it was like? Everyone has a kind of feeling they know what looking at a heart attack is like. We appreciate the general wasting of cancer, the awful slowwwww demise with alzheimers. But the liver...well, you go yellow don't you?
When, after several false starts (oh its food poisoning, no it's a stroke) we finally had the diagnosis of end stage liver disease I had to google it! Mainly I have to say because I couldn't understand the doctor telling me my husband was going to die.
I have to say I was very sceptical. Because Ron had *so many* things wrong with him I couldn't believe we had reached "end stage" anything without someone noticing. He was treated for MS. COPD. Diabetes and MRSA, so we were nooooo stranger to the hospital. In 2003 it was noted Ron had "Slightly elevated liver levels" and that was all that was ever said.
But here we were, shoot forward to 2006. It was June 24th. Family BBQ. Ron had had a drink - not a lot but was acting like the most drunk person in the world. We got him home, checked his sugar levels, nothing major there. But he went down hill and ended up in hospital...then we went through the stroke / poisoning routine / wait and see. Within about 24 hours he was shaking, like he was cold and kept closing one eye to focus to see. Then a terrific pain hit him like never before. Test upon test...inconclusive except for "Liver involvement". Then it happened. The liver turned on him. He shouted "I am not dead" "You cannot bury me". He shouted it over and over and over for twelve solid hours. The lights in the ceiling were spying on him, and so apparently was I. The nurses were trying to kill him, the other patients were spys. He wouldn't eat or drink. He couldn't control anything about himself. Then...he calmed. They cathaterised him and inserted a feeding tube. The calm lasted all of a day.
I stayed with him all day every day for five weeks. I walked in one day to learn he had ripped out the catheter and the feeding tube and was in a manic rage. At some point along this five week journey I was told this was end stage liver disease, there wasn't a lot they could do but they'd try. With loads of lactoluse they achieved periods of lucidity but it was hopeless. His hands would start to flap, then his legs. His eyes would go like tiny pin pricks as the madness desended.
On July 26th I was taken to one side and told this was it. End of the road. Take him home. I don't know what drugs they had him on, but he was calm and lucid. We renewed our wedding vows that afternoon.
It was strange to see all the monitors being taken away, no three hourly finger pricks to check the sugar levels, no pulse checks, no blood pressure, no daily draw of blood. In a bizarre way I felt we were making progress, this at least was humane. So much of what he'd gone through in the last few weeks was far from that.
He drifted, confused, scared, lucid, confused, scared...at one point he asked me what was wrong with him. I was honest.
He came home on Friday. He was conscious, quiet, drifting. Miraculously he held it together long enough to see his son from Canada. We talked but didn't talk. He was beyond the big talks, there were lots of I love You's. On Saturday things changed. He finally started to go that dreadful, awful colour I will always remember and always hate. He was in pain at the slightest movement. And then he began a monologue, a rambling diatribe about maths and mathmatical formula. If anyone dared interrupt him he had to start again. Hours and hours and hours later, he drifted asleep.
Our wonderful angels from our local hospice were in and out the whole time. At some point over the weekend the morphine pump went in and as it did, Ronnie really wasn't there any more. After weeks of turmoil, shouting, screaming, needles, tests, fear and nightmarish visions, my Ronnie went quietly, very quietly into whatever comes next.
If I hadn't seen it with my own eyes I would never, ever have believed that the liver could turn on a person like that. I wouldn't wish what Ronnie went through on the most awful person on earth.
Monday 2 August 2010
Four Years today
Four years ago today my husband died. I like to think I was with him the moment he died but in reality I was there probably several seconds later. He wasn't breathing and the only sign of movement was a single ripple of a muscle in his arm, like a little wave. I just kissed him...on the head I think. And I said a little prayer.
It was the end of five weeks of utter nightmare. Stuff Stephen King couldn't come up with. I never knew the body and mind could turn on itself like it did with R. Liver failure is the work of the devil.
And here I am four years on. A completely different person. Those years have gone quickly.
It was the end of five weeks of utter nightmare. Stuff Stephen King couldn't come up with. I never knew the body and mind could turn on itself like it did with R. Liver failure is the work of the devil.
And here I am four years on. A completely different person. Those years have gone quickly.
Thursday 29 July 2010
Aim of the Day...20 Appeals
Special K, raspberries and an anti-depressant for breakfast.
I'm planning on getting 20 appeals done today, go the library, pick up Chelsea's pills from the vets and NOT OVER EAT.
Wednesday 28 July 2010
All Brand New
Well, my very own blog. Started because I really need to keep a handle on my life and this might help me do it.
I hope to use this blog as a record of what I do, what I spend (!!!), what I eat (!!!)and how I feel day to day with being a working widow with all the crap that brings with it.
On the 2nd August I'll have been a widow for four years. I'll blog about that but I need to think about it first. I want to be honest and I don't just want to write what I think people will think I ought to write.
And...I've got that sick head feeling. I'll blog about Anti-depressants too.
Much Love...
I hope to use this blog as a record of what I do, what I spend (!!!), what I eat (!!!)and how I feel day to day with being a working widow with all the crap that brings with it.
On the 2nd August I'll have been a widow for four years. I'll blog about that but I need to think about it first. I want to be honest and I don't just want to write what I think people will think I ought to write.
And...I've got that sick head feeling. I'll blog about Anti-depressants too.
Much Love...
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