Three month update
Slowly back to reading posts on here about once a week plus DS friends' diary entries always. Still means I miss things (such as the farewelling of Jax) and useful information.
When I last recorded life events had had horrendous series of events. With scleroderma no cures but the summer is better for my daughter But some of us who have been relying "down under" on summer warmth to set us up for the winter with RA have been disappointed. Just too many fronts and pressure systems so this is worse few RA months I have had since the bad times at diagnosis. Depends of course where you live down here.
Ra has led to eye issues. Both GP and optician said scleritis. However specialist said blepharitis which is to do with eye glands complicated by some sort of allergy. No offer to try to find out cause. When questioned re episcleritis, the milder form of scleritis which only (!) affects the surface layer of eye he prevaricated. Didnt feel totally trusting of him. Have now read his letter to my GP on the subject where he suggests that episcleritis is likely to follow. It was a strange way of putting it ...."leading to episcleritis". Just asked for this copy as leaving GP and only read it at home but will question GP next visit.
My son whom I mentioned as referred to Hospital for Tropical Diseases turned out to have African Bot Fly. Hadnt been to Africa but southern Greece... A few years back I attended a lecture in UK by an expert on climate who covered the spread of diseases out of the tropics and this likely to be an early example. Almost certainly originating from mosquito bites which can carry these eggs. It shouldnt be living in Greece... Managed to find a UTube posting of this beastie and can see it would be pretty alarming to find not just one but three of these on your arm!!
My visiting ducks disappeared the week before Christmas. Picked up daughter at five from airport and by the time we got home at 5.30 they had flown. As a friend quipped "If you were a duck would you hang around at Christmas..."
The pool they loved was on Death Row. Government put up GST (goods and services tax) and made what was an expensive job before tax just too OTT. Organised a contractor to fill it in but having given us a quote and us accepting he disappeared! The town where I live is like this. A lot of wealthier older people retire here and although there are signs of recession in some closed businesses and slower/fewer house sales there hasnt been a downturn for tradespeople.
What to do? Condition good enough to use for another summer. I get students in at this time of year to do small jobs. Advertised kitchen clean up and a guy rang for it. (I pay an additional fifty percent on top of the minimum wage as I would feel mean having had student children looking for work to just pay minimum wage and jobs rarely more than a couple of days). When I opened the door was stunned. Before me stood a film star whom I refer to as the Greek god... He was very helpful too - kitchen had to have cupboards emptied and everything scrubbed. While talking he said his father in construction and painting and having heard re pool put in a quote saying he would use students. As it turned out his father, a really nice man, did it himself. His father is one of those who has worked his way up to a supervisory role in a business and so fitted it in in between his working commitments in another town. There wont be many on here who wouldnt be able to chip in to our conversation about how we will do anything for our kids....
Because not so well have had drug regime adjusted. Put on to 7.5mg of prednisone and that really put the brakes on the weight loss. Havent done anything different but really stalled. Had been on 2.5mg and getting away with so little. Mtx up but so are liver enzymes although not to alarming heights so putting that back down. Also even though bone density no worse than last scan in terms of rate of deterioration have to take the drug for that. And have more bloods blah blah... Still when I read posts on here there is always someone worse off, several someones, and at least I have a diagnosis which a couple dont seem able to get..
Autumn arriving, time to brace self for cooler times. And loved the winning entry of DS "Love is.." competition...
When I last recorded life events had had horrendous series of events. With scleroderma no cures but the summer is better for my daughter But some of us who have been relying "down under" on summer warmth to set us up for the winter with RA have been disappointed. Just too many fronts and pressure systems so this is worse few RA months I have had since the bad times at diagnosis. Depends of course where you live down here.
Ra has led to eye issues. Both GP and optician said scleritis. However specialist said blepharitis which is to do with eye glands complicated by some sort of allergy. No offer to try to find out cause. When questioned re episcleritis, the milder form of scleritis which only (!) affects the surface layer of eye he prevaricated. Didnt feel totally trusting of him. Have now read his letter to my GP on the subject where he suggests that episcleritis is likely to follow. It was a strange way of putting it ...."leading to episcleritis". Just asked for this copy as leaving GP and only read it at home but will question GP next visit.
My son whom I mentioned as referred to Hospital for Tropical Diseases turned out to have African Bot Fly. Hadnt been to Africa but southern Greece... A few years back I attended a lecture in UK by an expert on climate who covered the spread of diseases out of the tropics and this likely to be an early example. Almost certainly originating from mosquito bites which can carry these eggs. It shouldnt be living in Greece... Managed to find a UTube posting of this beastie and can see it would be pretty alarming to find not just one but three of these on your arm!!
My visiting ducks disappeared the week before Christmas. Picked up daughter at five from airport and by the time we got home at 5.30 they had flown. As a friend quipped "If you were a duck would you hang around at Christmas..."
The pool they loved was on Death Row. Government put up GST (goods and services tax) and made what was an expensive job before tax just too OTT. Organised a contractor to fill it in but having given us a quote and us accepting he disappeared! The town where I live is like this. A lot of wealthier older people retire here and although there are signs of recession in some closed businesses and slower/fewer house sales there hasnt been a downturn for tradespeople.
What to do? Condition good enough to use for another summer. I get students in at this time of year to do small jobs. Advertised kitchen clean up and a guy rang for it. (I pay an additional fifty percent on top of the minimum wage as I would feel mean having had student children looking for work to just pay minimum wage and jobs rarely more than a couple of days). When I opened the door was stunned. Before me stood a film star whom I refer to as the Greek god... He was very helpful too - kitchen had to have cupboards emptied and everything scrubbed. While talking he said his father in construction and painting and having heard re pool put in a quote saying he would use students. As it turned out his father, a really nice man, did it himself. His father is one of those who has worked his way up to a supervisory role in a business and so fitted it in in between his working commitments in another town. There wont be many on here who wouldnt be able to chip in to our conversation about how we will do anything for our kids....
Because not so well have had drug regime adjusted. Put on to 7.5mg of prednisone and that really put the brakes on the weight loss. Havent done anything different but really stalled. Had been on 2.5mg and getting away with so little. Mtx up but so are liver enzymes although not to alarming heights so putting that back down. Also even though bone density no worse than last scan in terms of rate of deterioration have to take the drug for that. And have more bloods blah blah... Still when I read posts on here there is always someone worse off, several someones, and at least I have a diagnosis which a couple dont seem able to get..
Autumn arriving, time to brace self for cooler times. And loved the winning entry of DS "Love is.." competition...
Replies
I have this great mental picture of your Greek god...any pictures? he he, just kidding.
It sounds that everything is falling into place for you as far as your health....we do struggle with the meds and getting doctors to figure out what\'s wrong before something goes wayyyy wrong, but you are right....it could be worse. How is your son though?????? Is he going to be ok? I hope that all is well.
Take care!!
Z