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Autumn 2019

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This was our front yard a month ago. The colors were magnificent this autumn. Penny

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PenSet

That's absolutely everything. Thank you.

blueeyedblond

Dear Penny,

Your gracious, gentle presence here on jigidi, in spite of the ongoing horror you and Barry live with, is a powerful witness. I WILL continue to pray for comfort for both of you. What more can one do?

Adrian.

PenSet

That's sweet of you to offer all those suggestions. Blood replacement would contain porphyrins, because we all have them. And need them. Trying to strain them out, by whatever means, would be a death sentence, because we do need them. But we need them to change, and that is the problem.

A friend of ours who is a nutritionist did some research and found that glutathione is one of the precursors needed in the change, and Barry found that taking liposomal glutathione in liquid form (which smell, and tastes, atrocious), was almost a miraculous help.

But the best we can do is slow it down. His bleeding hands are greatly soothed by both olive oil and Desitin as well as Calendula cream. Aloe does not help. There is also a prescription cream that helps. He needs Tramadol to sleep at night and even then can only get a couple of hours at a time. So we are doing what we can in slowing the beast down, but that's all we can do. Still, every day counts.

Thank you so much for your concern and prayers.

Penny

blueeyedblond

Dear Penny,

I am deeply saddened to read all this but thank you for sharing it with me.
As you know, Barry has been a distant hero of mine for a very long time.
You mention that the buildup of porphyrins is lethal. Is there any way to drain them off, or suppress their production, or reduce them in some other way? I assume the buildup is in his blood? Would blood replacement help? Can it be extracted and filtered or centrifuged (or something!) and put back in, in a porphyrins-reduced form?

(Am I being presumptuous in even suggesting such things? Obviously, anything that can be done has already been done. Please take it as an expression of concern from one who is distressed by what he has just read.)

That he has so outlived his life expectancy predictions is surely a testimony to the benefit he has received from the nutritional value of pure, home-grown veggies. I am frustrated by my inability to do this as long as we continue to live in a block of units, but have a few token veggies in pots on our patio, anyway. We were on the verge of buying an acre of fertile land on an island in Moreton Bay for that very purpose when this accursed virus struck. The contract was never returned by the vendors and the whole deal fell through.

Penny, I will pray for comfort for Barry, and for you. He has lived a life of good stewardship and I am sure many have benefitted from his research, his teaching and above all, his example. I hope you will continue to maintain the website when Barry gets to the stage of no longer being able to do so.

I am facing a few - minor by comparison - issues of my own, but will stay in contact from time to time.

With love to you both,
Adrian.

PenSet

Barry is a porphyriac, combined type. We discovered that about 12 or 13 years ago when his sister was diagnosed. It is the result of combined recessive genes from the parents, who don't know they are passing it on. Barry had thought he had several unrelated medical problems. It turned out they were all the results of the porphyria.

We all have porphyrins in our blood, and the vast majority of us also have about 8 different enzymatic pathways that turn these porphyrins into the heme that makes our red cells red. A porphyriac is missing one or more of those pathways. The build-up or porphyrins is lethal. There are very, very few porphyriacs in the world -- it is quite rare. A lot of doctors have never even heard of it. It has come down, interestingly, through the royal family in England! King George III was a porphyriac as have been several others who get quietly hidden away from the public.

For Barry it has included heart problems, weakness, tiredness as the porphyrins attack his tissues. It can be very painful. His left bicep detached at the shoulder several years ago and the tendons in his right rotator cuff are starting to detach now. He has become so photosensitive that going out in the sun causes his hands to bleed. However not even the sun is required for that anymore, and he wears cotton gloves when he goes downtown, partly for sanitation and partly to avoid disturbing people who see his hands. There is sometimes blood on his pillow in the mornings as his gums are receding a bit, although his smile is the sort that doesn't show his gums, so people are not aware of it. He is in pain a good part of the time.

All that said, he is remarkable. His brain is still sharp and his sense of humor wacky. He remains cheerful, kind, generous and the strongest Christian I know. He will be 78 in a couple of weeks. I grow most of our own veggies to keep all chemicals possible out of him. We have our own chickens for eggs. We buy beef from a local rancher who only has them grazing on some rich river land. There are some things which are helping, but nothing to stop it. Nevertheless, he was only supposed to live 60 years tops and he will be 78 on the 15th. I hate to see him in pain and bleeding, but I hate more to lose him -- so I simply pray for God's grace through this and His wisdom and comfort for both of us.

There it is!

Penny

blueeyedblond

Penny,
you wrote:
"Barry is getting weaker and more tired, but we knew that would come."
This comes as a shock to me. Is he suffering from some form of terminal disease?
For how long has this been known ?

Adrian.

PenSet

below: "county" not "country"

PenSet

Lot has been happening here! First of all, the country ripped out the two hundred feet of blackberries which were just on the other side of the property line in back of us -- they had been a great privacy hedge. They also ripped out the leaking ditch that was used to pump river water around the town (and which, because of the leaks, had given us some of the biggest and sweetest blackberries in town!) and are finishing putting in a large pipe and burying it. There are access points about every hundred feet. So, because we want that privacy back, we bought 54 one gallon photinias and just finished putting them in yesterday. They grow fast and the goats will love keeping our side 'trimmed' through the fence!

But about the vet. Since she is also a personal friend, she does come over socially, but that was not yesterday. Last weekend, Saturday, I was grooming Jakey, our mini-Shetland mix, and noticed a lot of 'drool' coming out his nose. Choke. It happens when an animal gets something caught in the esophagus, food backs up, and then they can neither eat nor drink. So I called Jean (the vet) and she came over and we spent about 1.5 hour with the nasal tube trying to break through the mess. We did, finally, and all seemed well. She said to let him chew on a little hay that evening but no other feeds.

Next morning he was bad again. Choke. So, on a Sunday, Jean came out again and this time we spent about two hours with the beast because the obstruction was much farther down, nearer the stomach. Got it clear. The week seemed fine. We had already scheduled, over a month ago, for her to come out Friday for the annual ranch call for worming and shots for all beasts except the chickens. She was delighted to see how good Jakey looked and her little grandson, who is autistic, was scared and delighted to be able to get on his back and sit there while I led him around the corral.

Then, yesterday morning, guess what? More choke. So I called her back, with apologies, and we decided we had to put him down. This was going to destroy him, and you cannot keep intubating an animal and not end up with aspiration pneumonia at some point, which is lethal. So that is what I was waiting for yesterday.

Jean came out and the horse was fine. It had cleared on its own. Sometimes minor cases will do that. Somewhat embarrassing, but it happens. So we yakked for awhile and I paid her and little William in cookies (frosted apple cookies, homemade), and she left.

Couldn't allow Jakey to eat all day yesterday and last night I put a small handful of beet pulp pellets and another of senior horse feed (also pellets) in some water to soften them. I'll turn it into a soupy mixture when I go out in a bit and see if that goes down OK. If it does, then this afternoon I'll cut up some hay for him into small pieces and see if that goes down OK. If it does, I'll keep that up for about two months to make sure his throat is fully healed. If he chokes again, though, and it does not clear by himself, there is something wrong in his throat (possibly a polyp) and we will have to put him down.

So that's the story, actually in somewhat short form!

Have also been digging the ground where the potatoes will go in, have got the onions started, the lettuce, peas and beans seeded and started....life goes on!

Got two new dogs after Shadow died. Rescue, of course. Brother and sister lab mixes, small -- about 50 lbs each. Almost 2 years old with 4H training, so they are delightful. Their owners never wanted them back from foster care and the foster care folk had them in a single room in a zero lot line house, so the dogs when crazy at first here, running and running all over. They've been here about 3 weeks now and are tremendously good dogs. Very intelligent, good early training, and eager to learn more.

So that's us. Barry is getting weaker and more tired, but we knew that would come. He feels frustrated by it, but his mind is still in great shape, and so is his sense of humor. We are blessed.

Penny

blueeyedblond

Yes, doing well, thank you.
And you?
If out working in that beautiful garden things can't be too bad where you are.

But how's the animal? Vets aren't in the habit of making social calls.

Beb.

PenSet

11 hours ago, when you wrote this, it was 11 a.m. Saturday morning here and we were waiting for the vet to arrive! I was out a good part of the day after that, working in the yard.

Hope you are doing well. God bless.

blueeyedblond

Hi Pen!
I was just about to log off... and saw that you are presently online. :D

Beb.

unicorn3

That is a great idea, a walk-through garden. - Wendy

PenSet

Thanks, Wendy. I love gardening. After mowing thousands upon thousands of square feet of lawn while the kids were growing up, I never wanted to again. So we have walk-through gardens. The fun part about them is that if I am behind, you really can't tell too much (not like a lawn!) -- and with bulbs and such, every season is different.

unicorn3

Wow! This is exquisite. - Wendy

PenSet

Thank you for dropping by!

nanab

Gorgeous fall foliage, we had pretty much the same most of which is gone now. It did hit 60F today, cold and windy days ahead. Thanks for sharing your beautiful picture puzzle.