Runners, you might want to sit this one out. It's an Addison's rant that might bore you...
I spend a great deal of my time and energy answering questions on my forum, fielding phone calls, exchanging texts and responding to personal emails regarding Addison's Disease. I've been doing this for over three years now and I'm noticing a trend.
Some people ask me for advice or information. They print out the info, read it, learn it and pass it on to their doctor (via paper or verbally). They then do research to round out their understanding and tailor their knowledge to their own experience. They make some effort to conform to the habits that people with Addison's Disease need to follow (as backed up by medical research, not just opinion). They post to my forum, call, email or text me with new information that sometimes contradicts the info that I've given them and sometimes dovetails nicely. I learn from these people. They are the survivors, they are the people who get well or, at the very least, handle their circumstances as they come along. They fight like hell.
Oh, the victims, just the thought of the HOURS and DAYS I've spent providing information to these people made me sigh aloud! They are apparently too ill to print out the medical studies that I've researched and linked for them. It's too much work to print it out, let alone read it, understand it and take the info to their doctor. They are too ill to beg someone to print out the link for them also. They are too tired to find someone to be an advocate for them. Apparently contacting me and asking me question after question (which they promptly dismiss outright or just ignore), might have magical powers and cause them to be well. Ugh, I've even offered to talk and give info to a partner but it's too much effort for the partner to call me and collect information for the sick person. I understand how it feels to be sick and unable to do much for months at a time. There's no way to get well if you have doctors who are mistreating you because you won't inform yourself. NO WAY. It seems that often doctors cause a cascade of problems for people with AI and treat symptom after symptom with drug after drug, causing the inevitable extended hospital stay and prolonged pneumonia (seems to be really common for people with AI).
Don't be a victim. Read about your diseases and how they are best treated. Experiment within reason on your own to see what works for you and your body. Get deficient hormones replaced to normal, MIDRANGE NORMAL, ranges!!!!!!!!!!!!!!!!! There's absolutely no way you can stop being a victim without learning and understanding your diseases.
The best way to start? Read the medscape.com summary of your diseases. PRINT THEM OUT. Ask people who have the diseases what they do and see if it's reasonable for you to emulate what they do (with a doctor's permission). Be a freaking survivor, damn it!
If you want to be a victim or martyr, please evaluate your motives. Are you "happy" in the victim role? Is it "easy" for you? Are you scared to have a life outside of sickness? Do you think that getting well means being confrontational with doctors (IF YOU BELIEVE THIS LOAD OF SHIT, YOU ARE VERY, VERY WRONG. Getting testing and treatment you need with doctors can be done nicely and so that they don't even notice.)? Do you just fear change? If the victim talk made you mad and you can relate to it, think about your motives for staying a victim and see if any hit home.
Start doing and become a survivor. Stop being a victim.
GET WELL AND LIVE.