Couple of PSAs
Couple of PSAs
First and foremost, we learned about two months ago that we are a family of MUTANTS. That's right. Me and my wife both carry a mutation that grants us improved resistance against Cholera and other intestinal infections.
Unfortunately, this is no comic book universe. When two of those mutations combine, you don't get superpowers. You get ill. Which, as chance has it, happened to our daughter. Now, before I tell you what it is she has: You may have already heard about it. And what you heard is probably outdated and/or exaggerated, based on worst cases and not the average case.
So with that in mind, what Z-Girl has is known as Cystic Fibrosis or Mucoviscidosis. The gene defects cause the transportation of Cloride ions out of cells to not work properly, which mostly leads to body fluids being way too thick. Life expectancy is lowered mostly due to lung damage caused by infections to something in the 50s range. Z-Girl is still doing pretty well in that respect. Other harm done is in the pancreas, hers is almost completely non-functional. Apparently that can be compensated quite well with the right nutrition and additives that replace the enzymes the pancreas usually spills out. Z-Girl is doing fine right now. I repeat: She is doing fine. She learned to accept the no always tasty additions to her meals, and the inhalations we do to keep her lungs healthy are a funny game for her. And in between therapy, she is just a regular little girl. There is little she is not allowed to do for health reasons. Knows all the planets up to Saturn and many letters already, too. And apparently, right about now drugs are entering the market that can do something about the malfunctions in the cells themselves. So hopes are up.
However, she does require way more care and attention than a regular child. And her sleeping patterns are fluctuating. That, I hope, explains the extra little time I had lately. Won't improve much, I'm afraid. Also, turns out slowly learning your child has an incurable illness is quite the emotional roller coaster. That seems to be mostly over now. After all, It's a quantitative change only. Yes, she will die too soon. We all do. Yes, there is the risk she will die extra early. Applies to all children. On the plus side, I'm much less worried now about fatal freak accidents. On the minus side, the zombie apocalypse has become more scary. Where would we get her medication, then?
Secondly: VACATION. I will be out of the country starting the the first of September for two weeks. Yep, that's Ladle Sunday. So no recordings from me this ladle. I'll try to get the server up, but the launch loop script has been simply exiting lately and I can't tell why, the whole screen session dies.
And lastly, my home server (hosting recordings, one master and the bzr/svn sync) may be on the way out. Found it overheated with fans going berserk this morning. It's a 15 year old laptop that has been running 24/7 for more than half its life, I'd say it had a good run. It looks recovered now, a couple of minutes of rest and a breath of fresh air (now it's running with the lid all open) helped. The screen has a couple of dead spots now, but who cares? I'll see if I can transfer the hosting functions to the NAS, which should be fun. Anyway, just so you know, if master1 is not responding, it may be because it is on fire.
Unfortunately, this is no comic book universe. When two of those mutations combine, you don't get superpowers. You get ill. Which, as chance has it, happened to our daughter. Now, before I tell you what it is she has: You may have already heard about it. And what you heard is probably outdated and/or exaggerated, based on worst cases and not the average case.
So with that in mind, what Z-Girl has is known as Cystic Fibrosis or Mucoviscidosis. The gene defects cause the transportation of Cloride ions out of cells to not work properly, which mostly leads to body fluids being way too thick. Life expectancy is lowered mostly due to lung damage caused by infections to something in the 50s range. Z-Girl is still doing pretty well in that respect. Other harm done is in the pancreas, hers is almost completely non-functional. Apparently that can be compensated quite well with the right nutrition and additives that replace the enzymes the pancreas usually spills out. Z-Girl is doing fine right now. I repeat: She is doing fine. She learned to accept the no always tasty additions to her meals, and the inhalations we do to keep her lungs healthy are a funny game for her. And in between therapy, she is just a regular little girl. There is little she is not allowed to do for health reasons. Knows all the planets up to Saturn and many letters already, too. And apparently, right about now drugs are entering the market that can do something about the malfunctions in the cells themselves. So hopes are up.
However, she does require way more care and attention than a regular child. And her sleeping patterns are fluctuating. That, I hope, explains the extra little time I had lately. Won't improve much, I'm afraid. Also, turns out slowly learning your child has an incurable illness is quite the emotional roller coaster. That seems to be mostly over now. After all, It's a quantitative change only. Yes, she will die too soon. We all do. Yes, there is the risk she will die extra early. Applies to all children. On the plus side, I'm much less worried now about fatal freak accidents. On the minus side, the zombie apocalypse has become more scary. Where would we get her medication, then?
Secondly: VACATION. I will be out of the country starting the the first of September for two weeks. Yep, that's Ladle Sunday. So no recordings from me this ladle. I'll try to get the server up, but the launch loop script has been simply exiting lately and I can't tell why, the whole screen session dies.
And lastly, my home server (hosting recordings, one master and the bzr/svn sync) may be on the way out. Found it overheated with fans going berserk this morning. It's a 15 year old laptop that has been running 24/7 for more than half its life, I'd say it had a good run. It looks recovered now, a couple of minutes of rest and a breath of fresh air (now it's running with the lid all open) helped. The screen has a couple of dead spots now, but who cares? I'll see if I can transfer the hosting functions to the NAS, which should be fun. Anyway, just so you know, if master1 is not responding, it may be because it is on fire.
Re: Couple of PSAs
First, I wanna say sorry to hear about your daughter. I guess at least there's the up-side that she gets to live a pretty normal life. There's still hope that by the time she gets to that point, there may be something that can be done. We're advancing pretty quickly in many areas lately (used as .. this section of years ..). Hope for the best I guess.
I was caught a little off guard with your closing paragraph, but I'm curious. How much of your resources does it take to run the master? Also, how much bandwidth does it use? If it's not very high, maybe I could run one.
I have a server and two desktops in my bedroom running 24/7. The only thing that would need watched for is power outages. We haven't had any lately, but it happens pretty easily here. I guess that's what ya get for moving into the middle of nowhere.
I was caught a little off guard with your closing paragraph, but I'm curious. How much of your resources does it take to run the master? Also, how much bandwidth does it use? If it's not very high, maybe I could run one.
I have a server and two desktops in my bedroom running 24/7. The only thing that would need watched for is power outages. We haven't had any lately, but it happens pretty easily here. I guess that's what ya get for moving into the middle of nowhere.
- delinquent
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Re: Couple of PSAs
I could offer the same, tbh. I'll try and get some ladle recordings too.
Re: Couple of PSAs
I'm so sorry, the best advice I can think of sounds perhaps contradicting at first:
On one hand, one shouldn't worry too much, I know from my own experience (colitis) and my father's (back pain), my grandfather's (cancer) that this is easier to say than to put into practice. We went to every doctor and consumed every (pseudo-)medicine someone else recommended, but usually found out that some minimalistic approach is sufficient already as you get used to your situation (I don't know if it's the same with Mucoviscidosis, but I'd bet it is). On the other, it's obviously good to keep experimenting with new stuff until one finds the therapy that works in the most promising way and has the least negative side effects, and stay informed. At some point I used to check Google News every morning to find out whether there are new therapies/studies/medications I could benefit from. But after a while this obsessive longing for a 'normal' life just distracts you from making the best of the one that you have (and finding solace thanks to the science that is already available, if you will - this is what I was unable to do, for a long time).
kind regards from another mutant
On one hand, one shouldn't worry too much, I know from my own experience (colitis) and my father's (back pain), my grandfather's (cancer) that this is easier to say than to put into practice. We went to every doctor and consumed every (pseudo-)medicine someone else recommended, but usually found out that some minimalistic approach is sufficient already as you get used to your situation (I don't know if it's the same with Mucoviscidosis, but I'd bet it is). On the other, it's obviously good to keep experimenting with new stuff until one finds the therapy that works in the most promising way and has the least negative side effects, and stay informed. At some point I used to check Google News every morning to find out whether there are new therapies/studies/medications I could benefit from. But after a while this obsessive longing for a 'normal' life just distracts you from making the best of the one that you have (and finding solace thanks to the science that is already available, if you will - this is what I was unable to do, for a long time).
kind regards from another mutant
- Lucifer
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Re: Couple of PSAs
Well, being your kid, she was already headed for a not-normal life, so nothing lost there.
Did she at least gain the ability to walk through walls? That would be cool. Extra-thick fluids, but can walk through walls! Fair trade to me.
Pardon me for being a bit light-hearted, I'm still an incurable optimist. She'll continue to be fine and will no doubt have a long, happy life anyway. One bad gene isn't enough to spoil the rest of them.
Did she at least gain the ability to walk through walls? That would be cool. Extra-thick fluids, but can walk through walls! Fair trade to me.
Pardon me for being a bit light-hearted, I'm still an incurable optimist. She'll continue to be fine and will no doubt have a long, happy life anyway. One bad gene isn't enough to spoil the rest of them.
Re: Couple of PSAs
Yikes! A parent's worst nightmare come true. You are a more courageous man than I. The fear of having a child with any level of handicap has made me steadfast in my decision to not have biological children, but rather to adopt. Admittedly, my reasoning is selfish and based on completely unwarranted guilt; it's the feeling that I would cause a person's lifelong suffering. "If it were not for my bad genes you would be free of this handicap!" This is how I imagine my internal dialogue if such a thing were to happen. Even though I know my fear is unfounded (who can predict the outcome meiosis?) it is still something I have not been able to get past. I applaud you for taking the risk and having strength in adversity. Good luck my friend.
Last edited by sinewav on Thu Aug 22, 2013 4:44 am, edited 1 time in total.
- Clutch
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Re: Couple of PSAs
Are you mesinewav wrote:Yikes! A parent's worst nightmare come true. You are a more courageous man than I. The fear of having a child with any level of handicap has made me steadfast in my decision to not have biological children, but rather to adopt. Admittedly, my reasoning is selfish and based on completely unwarranted guilt; it's the feeling that I would cause a person's lifelong suffering. "If it were not for my bad genes you would would be free of this handicap!" This is how I imagine my internal dialogue if such a thing were to happen. Even though I know my fear is unfounded (who can predict the outcome meiosis?) it is still something I have not been able to get past. I applaud you for taking the risk and having strength in adversity. Good luck my friend.
Boxed
Re: Couple of PSAs
Really sorry to hear about your daughter Z-Man. She's in my prayers and I hope she's doing well.
- Jonathan
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Re: Couple of PSAs
I'm sorry to hear that. At the same time it's nice to see what science has done; even 'healthy' people haven't always had such a life expectancy. You have the right attitude. Best of luck to the three of you.
If you're going to include Pluto, don't stop there! This is important!Z-Man wrote:Knows all the planets up to Saturn and many letters already, too.
ˌɑrməˈɡɛˌtrɑn
Re: Couple of PSAs
Knows all the planets up to Saturn, huh? Mercury, Venus, Earth, Mars, Ceres, Jupiter, and Saturn?Jonathan wrote:If you're going to include Pluto, don't stop there! This is important!Z-Man wrote:Knows all the planets up to Saturn and many letters already, too.
Re: Couple of PSAs
Awe, you're so nice. You don't discriminate against dwarfs. Pluto is still a planet too! d:sinewav wrote:Knows all the planets up to Saturn, huh? Mercury, Venus, Earth, Mars, Ceres, Jupiter, and Saturn?
Re: Couple of PSAs
Light wrote:Awe, you're so nice. You don't discriminate against dwarfs. Pluto is still a planet too! d:sinewav wrote:Knows all the planets up to Saturn, huh? Mercury, Venus, Earth, Mars, Ceres, Jupiter, and Saturn?
FREE PLUTO
Re: Couple of PSAs
thanks, everyone!
Lucifer: She will have super boogers! While that is not usually something girls would be proud of, she is big into cars. So who knows?
Plus, she got special dietary instructions. Hold on to your hats: she is supposed to eat lots of salt and lots of fat. Yes, you combined that right. She can eat all the junk food she wants and probably won't grow fat from it.
Jonathan: The pictures we're using for teaching that do not even include any moons Dwarfs are completely out. I need to get a proper book one of these days. Wait, we already have one.
(Two hours and physics, astronomy and biology later) WELL THAT WAS A GOOD IDEA. Thanks, Obama.
Sinewaw: no worries, there are plenty of chances to screw kids up with education, and that would definitely be your fault, then But seriously, adoption is the way to go for other reasons and not selfish at all. We considered it, too, but this is Germany. Adoption procedures make that the scarier alternative.
Light: A master takes much less resources than a regular game server. You should be able to run one no problem. Even though my home server is definitely fine again for the next couple of months, we could use another server. Running one is not hard: pass --enable-master to configure (was the default once, we may have disabled it by now) and give it lots of client slots; it starts with "/etc/init.d/armagetronad-master start" and needs to listen to port 4533. The hard bit will be getting Tank to link one of the dns cnames to it.
Lucifer: She will have super boogers! While that is not usually something girls would be proud of, she is big into cars. So who knows?
Plus, she got special dietary instructions. Hold on to your hats: she is supposed to eat lots of salt and lots of fat. Yes, you combined that right. She can eat all the junk food she wants and probably won't grow fat from it.
Jonathan: The pictures we're using for teaching that do not even include any moons Dwarfs are completely out. I need to get a proper book one of these days. Wait, we already have one.
(Two hours and physics, astronomy and biology later) WELL THAT WAS A GOOD IDEA. Thanks, Obama.
Sinewaw: no worries, there are plenty of chances to screw kids up with education, and that would definitely be your fault, then But seriously, adoption is the way to go for other reasons and not selfish at all. We considered it, too, but this is Germany. Adoption procedures make that the scarier alternative.
Light: A master takes much less resources than a regular game server. You should be able to run one no problem. Even though my home server is definitely fine again for the next couple of months, we could use another server. Running one is not hard: pass --enable-master to configure (was the default once, we may have disabled it by now) and give it lots of client slots; it starts with "/etc/init.d/armagetronad-master start" and needs to listen to port 4533. The hard bit will be getting Tank to link one of the dns cnames to it.
Re: Couple of PSAs
Hmm. I got the master running and all, but not sure how to modify settings such as client slots. I would assume after how it's done for the server that the master would also use an external config rather than source edits for settings. (hoping so)Z-Man wrote:Light: A master takes much less resources than a regular game server. You should be able to run one no problem. Even though my home server is definitely fine again for the next couple of months, we could use another server. Running one is not hard: pass --enable-master to configure (was the default once, we may have disabled it by now) and give it lots of client slots; it starts with "/etc/init.d/armagetronad-master start" and needs to listen to port 4533. The hard bit will be getting Tank to link one of the dns cnames to it.
But, it's up and should be reachable at lightron.tk.
- delinquent
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Re: Couple of PSAs
Is it possible to run one on a windows server?