I'm pretty tired today. Will touch on a few points. I reserve the right to reply more later, should I come up with more to say.

Other reasons for hostility: As you noted, those who have been around a while and were "big names" in the CF community were often my biggest opponents. I can be pretty charismatic and I was stealing their thunder. I think I must have been the cutest 3 year old in the history of the universe (or at least treated that way by the people I knew -- I don't mean it too literally) and got socialized in a problematic way. I have used all the really horribly negative feedback to help me root out some of the stupid crap from my childhood. I don't share the health info out of ego but it's easy for me to soak up the limelight and then miss the fact that nothing constructive is being done, that the issues are not being discussed because people who are miserable have gotten distracted by a relatively rare feel-good moment in their lives. It's taken a lot of effort for me to learn to work this from another angle. In that regard, it's definitely been a growth experience.

Additionally, I am of the opinion that doctors and drugs are part of the problem. This doesn't go over well with people living with a death sentence whose doctors and drugs help keep them alive. They can't imagine a solution that doesn't involve serious drugs. So they do fundraisers for the CF Foundation to the tune of thousands or tens of thousands of dollars (and spit in my face for having ads on my site). The CF Foundation is in bed with big pharma and looking to develop better drugs (to line the pockets of the industry that gives them millions every year). Many in the CF community bitch about what doctors do and what the CF Foundation does and all that but the mantra is also "drug side effects are a necessary evil".

Also, I threw out everything I ever owned, got divorced and moved cross country to break the cycle of infection. This is very scary stuff for people who are ill, financially dependent on their spouse because they are often too sick to work, and dealing with large medical bills and so on. They are scared, and with good reason. The things I did sound very risky. They really aren't. It was a slippery slope and one thing led to another in a logical fashion. It wasn't anything radical, but trying to compare the life I have now to the way they live makes it sound extremely radical.

I have found that people with a newly diagnosed child or who have been doing alternative stuff for a long time are more able to understand and use the information I share. Other people just can't fit it into their "disease model" mentality if they are too entrenched in conventional treatments.

I do have a tiny private email list. Some months ago an older man joined who has been doing alternative stuff a long time. He was able to ask good questions and start the conversation somewhat there. That list might eventually grow.

Cynical observation: At least one woman who was incredibly ugly to me has already died. Doctors don't know how to get people with CF well and the life expectancy is pretty low (around 36 or 37 in the US). So all I have to do is outlive my critics and eventually a new generation will be there who hasn't been psychologically poisoned yet and those folks who hate me won't be around to trash me. <shrug>

I don't think I ever mentioned monetary goals. There really aren't any. I hope to make money another way. The current tentative plan is to make money via a web comic, which hasn't been launched yet. I am okay with sorting out what flies and what doesn't based on what fails (or even fails to launch at all). Another interest of mine is clothing. When I was younger, I wanted to be a fashion consultant. I've done a few posts here inquiring about the clothing space. Now that I have a full-time job (I was a homemaker for 2 decades), it is clear to me that a better paradigm for office wear for women is desperately needed. We currently have basically two paradigms for how women can dress: A) sluts R us and B) She's a man, baby. We desperately need "power dressing for women, and no I'm not some imitation man, thank you". I think I am somewhat uniquely qualified to try to promote such an idea, though I can't figure out if actually producing a clothing line would be the way to go or if there is some other path to promoting that...and a million other details.

FWIW: I was quoted in a health book at some point under my full name. It lists my diagnosis and the diagnosis of my son. One of the co-authors has two children with CF. So my name is getting out there, albeit slowly. I'm okay with that. The CF community needs time to absorb it. I'm a pretty shocking figure and have long been a lightening rod for controversy, regardless of the topic. Before going down in flames in CF-land, I used to be routinely at the center of a firestorm of controversy on gifted/parenting lists. I would kind of like to get back to updating my parenting site as well, but it has the same issue my health site has: No direction and no audience because no one will talk to me. I burned a lot of bridges while going through drug withdrawal. People were far more forgiving and tolerant while I was a basketcase. I think probably people stopped being tolerant and forgiving because I got well. I think it probably makes it harder for them to accept their own personal failures and excuses in life and that is more unforgivable than the rampant foot-in-mouth disease I suffered while in constant excruciating pain and doped to the gills. When I was a basketcase, they could be nice about it and feel good about themselves and be glad their life was better than mine.

As for the game, there are a million little things I do to avoid exposure to germs, fumes and so on. It's hard to convey that in written word. I also want to present the mental models I have for how you build health and gradually alter your body chemistry so you don't need the drugs. Every single thing you do every single minute of every day impacts your body chemistry, the germs you carry (and we all carry millions of microbes -- you can't even digest your food without them) and so on. The power to beat this deadly condition lies in the many small things that get done. CF is so deadly that people want to nuke the body with really strong drugs, which worsens the problem in the long run. They need to build up the body, and do so gently. And until it is rebuilt, it needs to be protected from all kinds of stuff that wouldn't be a big deal for a "normal" person. Afterwards, many of those things need to be maintained. Healing the body does not make the genetic defect go away. But it can be compensated for so it isn't so disastrous, just like being Caucasian doesn't doom you to being chronically sunburned to the point of peeling and then dying of skin cancer at an early age. There are things you can do to protect yourself. The complex, myriad set of choices I make through-out the day are critical to my ability to stay off drugs. That needs to be conveyed somehow. Right now, people hear "just stop taking drugs, they are bad for you" and rightly react to that with "are you nuts??? that would kill me!" Of course it would. You can't simply reject drugs and live with CF. You have to find non-drug approaches that work to make the drugs unnecessary before you can leave them behind. And that's an extremely hard point to convey.

I've been told a Rogue-like game would likely be the best place to start for modeling some of the data I want to convey, like tracking germ exposures, body chemistry, etc. I do not have first hand familiarity with such games. This was feedback from my adult son with CF who plays a lot of games.