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Ooh, I was intentionally being vague, cuz I was hoping to avoid getting into it here. :-D I was diagnosed with "atypical cystic fibrosis" in May 2001. I was extremely ill at the time. I had been bedridden for 3 1/2 months earlier that year. My doctor told me "people like you don't get well, symptom management is the name of the game". My oldest son ended up with the same diagnosis and had not been on antibiotics for over 3 years at the time that he and I were diagnosed. So I just couldn't accept the pronouncement that I should simply accept a slow, wasting death as my only possible lot in life. I am currently drug free. I got off the last of my medication in early summer this year. I have not been on antibiotics in close to 6 years. I got off digestive enzymes (that I am supposed to need "for life") a little over three years ago. I am well enough to work a full time job for the first time in my life. I live without a car (in part because what I've done has been fairly expensive and not covered by insurance, so it all came out of my pocket and my pockets aren't deep). With living without a car, I do quite a lot of walking as part of my lifestyle -- something I'm probably supposed to be too sick to pull off....etc. Attacked: No physical attacks (so far). I have had someone imply that I am a neglectful mom because my adult son with CF has chosen to not see a doctor since he turned 18. The fact that he is healthy is apparently irrelevant. If you have CF, you are supposed to get checked several times a year. The fact that we were diagnosed late in life and so for most of our lives went to the doctor only when sick (like normal people do) and we aren't sick right now is apparently no excuse for such heinous behavior. I have had people imply I am a charlatan, an attention-monger, have Munchhausen. I have had people accuse me of being up to no good because there are a few ads on my website, so clearly I am a snake-oil salesman as anyone trying to make money off of health information is not to be trusted. (These same folks routinely say you need to run everything past your doctor. It seems lost on them that their doctor makes a lot more money than I do and might also be subject to conflict of interest.) I have had someone imply that my son is the product of an incestuous relationship. I have had people imply that I fast-talked some doctor into signing off on a diagnosis of CF for no real reason...and similar. I've seen controversy before. I used to go down in flames routinely on parenting and homeschooling lists, where, on the one hand, I was quite "popular" (or at least a vocal minority liked my ideas) and, on the other hand, I tended to be a lightening rod in part because I did a lot of things that didn't agree with the norm -- much as I still do in terms of my health. However, at the time, I was also doped to the gills, in constant excruciating pain, had horrible insomnia and was simply very ill. I guess I had fantasies that when I stopped being doped up, in pain and very ill, all this crap would go away. I do cope better with it and I manage to generally not put out fires with gasoline these days <grin>, but I remain at the eye of the storm. It's really gotten to be quite tiresome. Sigh. Thanks for engaging me in conversation. |
I strongly recommend you find a trusted friend/family member/mentor/etc. to talk with about your concerns. It's really difficult to get a handle on a situation as complex as what you've described without knowing you personally. So I can't really say anymore than that.
But please do take my advice. I wish you well. :)