My sons have been dragging me slowly into the gaming world. They have introduced me to Tiberian Sun and, more recently Master of Magic. I have played Simcity for years and, historically, was really good at games like Tetris, Dr. Mario and Minesweeper but always hated games involving fighting and generally was not good at them. My sons keep emphasizing the aspects of the games they introduce me to that are "like Simcity" -- ie the infrastructure development parts which are critical to supporting a good military force and that this is actually a bigger part of some of these games than the fighting per se. Then they sit with me and coach me sometimes so I don't get thrown to the wolves. We recently started a website together in part to talk about games ...well, that doesn't do it justice but it will have to do for now. So I am, actually working on stuff. Just not actually coding and that makes me very frustrated. It feels so far away.
But thank you for the feedback! It makes me feel better about where I am on this whole thing -- that maybe I am not just spinning my wheels.
How about just a list of actions you've taken and the results that you've gotten from them?
I think that it self would be revolutionary if the methods you describe are clearly and measurably effective.
I want to do the same for people with knee pain. Knee pain is a huge subject and there is some really good research on how to prevent it with proper exercise. I just dont see it disemminated well enough to the public.
I have a website already where I have attempted to do that kind of thing. One of the first pages on it was a checklist. It grew out of an email that got the response of "Can I forward that to someone I know who has a child with CF?!!" I felt being able to share a link would be better than having people forward my emails all over the place. Unfortunately, the only people who seem able to benefit from the website mostly fall into one of two categories:
A) People who have pursued alternative remedies for a long time who therefore have some context for what I am talking about.
B) People with a fairly recently diagnosed child who have not yet been inculcated with the current thinking.
Also, I was extremely sick at one time and spent about a year at death's door. When someone is that sick and heavily medicated, learning new material can be very challenging. But games often were a godsend to keep me harmlessly occupied and also happen to be an excellent educational tool.
As for "measurably effective", although I do my best to provide links to supporting information, at this point in time people essentially have to take my word for it. I'm not interested in being Joan of Arc or some such (what with her being burned at the stake at the age of about 19). I don't want people to do this "on faith" because they believe in me. I am very painfully aware that people tend to divide up between folks who react like I am some hero/savior figure and folks who would like to put together a lynch mob. It's extremely important to me that people understand and what I am doing currently is insufficient to that task. It is imperative that I develop an educational tool so people aren't putting their lives in my hands on faith/belief in me personally and can, instead, effectively take their lives in their own hands. (As an aside: currently, such individuals routinely put their lives in the hands of others -- mostly doctors -- so that is a familiar model for them and I think it is part of the problem. So I don't think you can even achieve the goal by following such a path. Thus what would be the point, other than possibly ego gratification?) If I can't overcome that obstacle, I am willing to walk away (rather than be martyred, literally or figuratively) and go live a "normal life" now that I am well enough to do so for the first time in my life.
Firstly, I commend you on
1) realizing that doctors are not responsible for your health.
2) finding a solution to your health problem.
The first thing you need to IMHO do is to gather emails of people who are interested about the information you have.
1.) This will give you the motivation to progress further - ie you'd be helping all these people.
2.) Also you'll have a way of getting feedback on your efforts from these people in the future so you know if your making headway.
Maybe you should be targetting the people who love/care for people with CF ? Because of this disease, they may have studied more about the illness than the patient herself?
About the haters - if your doing anything of significance, your going to have people who hate you. This how the world is. And seriously, if you have haters then you should realize that you might be on the right path.
One way to "prove", to yourself and the world, that your ideas work,is to have someone else follow your methodology and keep a detailed log of what they did/when and the progress/lack-of-progress that they saw.
I appreciate the feedback but that isn't going to work in this case. There are a few people who have tried some things and given me positive feedback. It is one reason I haven't removed the site. In recent months, I post a lot less to health lists than I used to. Part of that is circumstantial (I worked overtime regularly for several months and my previous computer died, leaving me without a computer for three months). But part of it is that fighting with people is not turning out to be a good means to help them (and isn't a great experience for me either, though I can put up with quite a lot of crap if it is at least accomplishing something, but it's not). They are very ill. It is a highly charged subject. Most of the time, members of the community are incapable of behaving rationally (been there, done that, got the t-shirt). They are desperate for a solution and some folks in the community will raise tens of thousands of dollars for the CF Foundation while at the same time making ugly accusations about my motives because there are a few ads on my website.
When my youngest son was about 15 months old and newly walking, there was a place on our street where the sidewalk had a one inch high curb. He was a clumsy kid and would get down on hands and knees and crawl over that curb. If I am going to effectively reach more than a handful of people, I have to go around and remove all barriers, no matter how small. These are people for whom small things can be quite deadly. Asking them to take risks with their health on some unproven theory is insane. Bill Gates has said something like "Your unhappiest customers are your best source of learning". I have concluded that the folks who would like to lynch me are basically saying that I am a serious threat to their welfare and that sharing the idea that one can get well without sharing enough information for others to effectively and safely replicate the process is doing more harm than good. If I want to do something other than piss and moan about how no one is ever nice to me, I have to take that message seriously and DO something more effective.
Thank you for the feedback and the chance to think through this some more.
I just had a look at your site. I think its very informative but just having so much text will put off a lot of people.
There is just so much information that its kind of overwhelming.
You really need to talk to a good designer on how to create a smaller but more graphical site which can convey the information layer by layer.
And I can see how a game could help convey this information though I think a better illustrated website might be a cheaper and faster way to get a start.
And for the people who are criticizing your work - I think you should ignore them. Help the ones that want the help and go from there.
One simple way would be to list out the top 7 SAFE actions that you've taken that have helped with your CF. Put that on your front page. And then from there link to other pieces of information. That way the user has something useful right on the front page.
The pared down checklist might be good enough. Right now its a link that I had to find - it would be good to put the most important information on the front page.
After that you need to make the site more legible w.r.t font-size and the colors and the general design.
From a tactical standpoint I would advertise for a web designer who also has CF. I'm guessing you might know how to find one. And then show him the site and ask their help. If your site helps them then its possible they will put in the effort to help others.
Keep working on this. You can email me at railsnoob at yahoo dot com if you want me to review something.
I basically haven't been online the last few days. Happy to trip across this reply.
I will keep your suggestions in mind, though right now there is no money to hire a designer. I did not start this site to make money and getting well has left me deeply in debt (though not getting well would likely have worse financial consequences and I at least have hope of cleaning up my financial mess now that I am healthy enough to work consistent overtime).
I think the stuff I do is very safe. It is certainly safer than the path most people with my condition take. But what I am running into is that a lot of them just don't have background info I have and therefore people sometimes make extremely dumb mistakes that can seriously damage their health. So what seems "obviously" safe to me is not necessarily safe for someone who lacks general information about physiology, chemistry, or whatever and therefore doesn't know to avoid certain pitfalls.
I'm actually glad to hear the amount of info is overwhelming. I always feel there is way too little info on the site.
As for the people who criticize: To me, the main issue is that I have been thrown off some lists and the moderators usually side with the people who are attacking me. So if I don't deal in some fashion with my critics, I may be unable to reach those folks who are interested. Yes, when I really don't feel well (or people have been especially ugly to me), I whine and cry about how people are mean to me. But that isn't really my main concern. However, some folks have found the website on their own without first meeting me on an email list. And those folks typically are far more interested in and open to the information. So I have been rethinking my relationship to my audience, I guess.
Thank you for the feedback! It's something to go on.
My sons have been dragging me slowly into the gaming world. They have introduced me to Tiberian Sun and, more recently Master of Magic. I have played Simcity for years and, historically, was really good at games like Tetris, Dr. Mario and Minesweeper but always hated games involving fighting and generally was not good at them. My sons keep emphasizing the aspects of the games they introduce me to that are "like Simcity" -- ie the infrastructure development parts which are critical to supporting a good military force and that this is actually a bigger part of some of these games than the fighting per se. Then they sit with me and coach me sometimes so I don't get thrown to the wolves. We recently started a website together in part to talk about games ...well, that doesn't do it justice but it will have to do for now. So I am, actually working on stuff. Just not actually coding and that makes me very frustrated. It feels so far away.
But thank you for the feedback! It makes me feel better about where I am on this whole thing -- that maybe I am not just spinning my wheels.