jay
01-20-2010, 07:20 PM
Hello All,
My name is Jay and I am a Farrier from south eastern PA. 48 yrs old
Married 2 kids, boy 15, girl 11. Diagnosed at 42, 6 yrs. 6, surguries.
1 perc, 5 laser lithos. Like KC rockin, I have been here before, but always hoped this would go away. I am packing #6 stent as I write. feeling good too.
This was a good one, last time it was bad. Especially considering the nature of my work. The fact that I sweat my can off for 8 months of the year doesn't help the situation much either but....what can you do.
I can drink 2 gallons of water with some gatorade, (for electrolytes in the blazing heat). But in that heat, I may only urinate 2 or 3x from 8 to 5, and the rest goes to sweat. a tough act according to my urologist. A wonderful man who has assured me He is in this with me for the long haul. We always joke that he has to keep me going because I shoe alot of the other doctors horses in the area. So if I can't get it done, he'll have to hear it.
I like him alot.
Any way I just decided to be a little bit more involved with this thing, by at least making myself known to others with/and or with interest in, this condition. I don't know how much I can do at this point, but I guess I'll find out more about that as the days / months/ and years, go by. since cystinuria isn't going anywhere fast, and God willing neither am I.
My sister is the executive director of the cisticfibrosis foundation Del Val. Chapter. And in speaking with her about "orphan diseases" like ours,
( a term she added to my vocab). She helped me to realize that "we" are the main hope for each other, not only to try to live together to manage a common problem. But also to try to help educate others and find those who, (like the new director of the NIH). would have a heart to try to help find, if not a cure, than at least better ways to live with this thing ,and thereby bring us all hope for the future.
So thats that. If you would like to visit my website you may go to
Jayflynnhorseshoeing .com, that is my Professional site.
( put a face to the name) My wife made it. I can barley check my e-mail.
I'm not the sit down at the computer much guy. Working , coaching baseball and soccer, and being involved in continuing education in my profession are my things , and like KC I have alot to be grateful for, and to the same one it appears. Halleluia brother. He will get us through, and bring us home. A great deal by any measure.
So I hope you all have had great day, Friday will be the worst one of this week when I get the stent pulled, ( everyone's warm and fuzzy moment I'm sure). I"ll never understand what ever happened to ether, I often try to bargain with them to hit me over the head with a 2x4, I'll even bring it I tell em. But to no avail. 2, 10-325's within 2 hrs. 1 at 10am and 1 at 12:30 for the 1 O clock ride is my formula. Then dinner and a movie, you drive Hon.
God Bless and keep you all
Jay
My name is Jay and I am a Farrier from south eastern PA. 48 yrs old
Married 2 kids, boy 15, girl 11. Diagnosed at 42, 6 yrs. 6, surguries.
1 perc, 5 laser lithos. Like KC rockin, I have been here before, but always hoped this would go away. I am packing #6 stent as I write. feeling good too.
This was a good one, last time it was bad. Especially considering the nature of my work. The fact that I sweat my can off for 8 months of the year doesn't help the situation much either but....what can you do.
I can drink 2 gallons of water with some gatorade, (for electrolytes in the blazing heat). But in that heat, I may only urinate 2 or 3x from 8 to 5, and the rest goes to sweat. a tough act according to my urologist. A wonderful man who has assured me He is in this with me for the long haul. We always joke that he has to keep me going because I shoe alot of the other doctors horses in the area. So if I can't get it done, he'll have to hear it.
I like him alot.
Any way I just decided to be a little bit more involved with this thing, by at least making myself known to others with/and or with interest in, this condition. I don't know how much I can do at this point, but I guess I'll find out more about that as the days / months/ and years, go by. since cystinuria isn't going anywhere fast, and God willing neither am I.
My sister is the executive director of the cisticfibrosis foundation Del Val. Chapter. And in speaking with her about "orphan diseases" like ours,
( a term she added to my vocab). She helped me to realize that "we" are the main hope for each other, not only to try to live together to manage a common problem. But also to try to help educate others and find those who, (like the new director of the NIH). would have a heart to try to help find, if not a cure, than at least better ways to live with this thing ,and thereby bring us all hope for the future.
So thats that. If you would like to visit my website you may go to
Jayflynnhorseshoeing .com, that is my Professional site.
( put a face to the name) My wife made it. I can barley check my e-mail.
I'm not the sit down at the computer much guy. Working , coaching baseball and soccer, and being involved in continuing education in my profession are my things , and like KC I have alot to be grateful for, and to the same one it appears. Halleluia brother. He will get us through, and bring us home. A great deal by any measure.
So I hope you all have had great day, Friday will be the worst one of this week when I get the stent pulled, ( everyone's warm and fuzzy moment I'm sure). I"ll never understand what ever happened to ether, I often try to bargain with them to hit me over the head with a 2x4, I'll even bring it I tell em. But to no avail. 2, 10-325's within 2 hrs. 1 at 10am and 1 at 12:30 for the 1 O clock ride is my formula. Then dinner and a movie, you drive Hon.
God Bless and keep you all
Jay