@hopeful33250 Seriously so, Teresa. Everyone must develop their own coping mechanisms.
1. I learn everything I can about my issues, regardless their origins.
2. That includes, in my case, looking at genetics, the full genome. I learn what national and international, as well as local, organizations might help me in some way. I keep a notebook with this stuff.
3. I track everything I think might be important. Blood pressure, pulse, bleeding, glucose, medicines, rash, edema, everything.
4. I make friends with local docs, nurses, ambulance crews, pastors, etc.
5. I do some research on my own, knowing that no doctor or lab can know everything. such as, that FKTN and GSN and Noonan Syndrome are nearly identical triplets in impact on the body, and one is rarely found without the other two.
6. I take my meds conscientiously, unless the clinic or the pharmacy messes up my Rx. Then I raise he//.
7. I have friends around the world who lift me up. Russia, Brazil, Tanzania, Nepal, makes no difference. All the appearance issues are a matter of genetics and other things, so none of that really matters.
8. I make a serious point of trying not to judge any thing or any one else, such as age, gender, appearance, habits, education, anything. I know I have made many mistakes in my life, and they embarrass me. So I try to avoid hurting any one else or get in their path. This is a matter of decision and commitment, more than anything else.