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I got chronically sick and here's what I discovered. I'm sure there are exceptions to all of the following statements. I'm just one guy so I haven't found them yet.
1. You have to pay the doctors even when they don't do anything useful for you. They make their money no matter what the out come is.
2. The doctors will all have a different diagnosis. Go figure.
3. When you turn to non western medicine the ride gets even more expensive and fruitless (your insurance won't cover it and its expensive). Also this realm is chalk full of total quacks, guru wannabes, voodoo, magic and pure blind faith. It seems to me the placebo effect is the largest part of any successful new age diagnosis and treatments. That will piss a lot of people off, please prove me wrong! cure me. I will worship you:) Success talks bullshit walks. I don't get paid if I don't deliver.
4. Doctors will all treat you like an inferior. After all they are doctors and your probably not. You have to admit that may be true. But "common since" is not distributed evenly amongst the human race doctors included.
5. If you don't show any symptoms visually (like a bone sticking through the skin) most of the people on this planet will believe you are weak, its all in your head, you just don't eat right, your lazy and don't want to work, etc. etc. This will be hard to deal with and you will find your self becoming more and more of a shut in. Avoiding people because you don't want to explain that you don't feel well to one more person. Just to avoid seeing the look of (oh one of those) on there face.
Face it after 10 years +, your on your own, the Calvary aint coming. You have to figure it out your self, its the only chance you have. Read, surf the internet, talk to people that have your symptoms, learn as much as you can. Then cautiously start trying stuff. Choose wisely you can run out of luck and money real quick. Start a daily diary and make notes of what you consumed, what treatments you tried and how you felt. Look for patterns (that's a biggie). If you have a friend that can enter all of this info in a database call in a favor. If the daily info is in a database the computer can spot patterns way faster than you can. If you don't have a database programmer buddy, email me I will help you.
Things you can do
Number 1 don't feel sorry for your self, get pissed off. You will get a lot more done if you are determined than you will just letting it stay the same. You got dealt a bad card, deal with it. You may be the best if not only chance you have. Try to laugh as much as you can.
When you start researching you will find that all the experts/doctors disagree on almost every thing. So what's right. the question should be is what's right for you. What works for others may not help you one bit. Even though they seem to have the same symptomology.
The first thing you may find is all of the snake oil salesmen. These are all of the non FDA approved food supplements. Bottles of all natural blends reportedly developed by some famous out of the country doctor, who after years of research discovered the solution to your illness. There are literally thousands of these blends floating around the internet and on TV and magazines. You would need to be millionaire and have lots of time to try all these out before you find one (if you do) that would even help. Its just a simple fact that most of these blends are not helpful to any one but the people that sell them. For every 1000 there may be 5 or 6 that actually have significant research and testing to be useful. They will usually use the word ALL NATURAL to promote the product. The word natural has become battle cry of desperate and un informed. Arsenic, Thallium, Mercury are 100% natural so why not down a cup of these elements? Because they will kill you.