Since I’ve gotten sick I’ve heard my fair share of judgement and criticism. It’s never really bothered me before.
My family is divided on my illness. My mom wants me to move near her so she can help with me. My dad thinks I should stop all my medication and exercise, knowing I can pass out at any minute. I’ve completely changed my diet, lost weight, and have difficulty tolerating food. But to my dad this is just something exercise can fix…How? How would it help if I can’t even get the nutrients I need?
Words..people use them knowing the power they hold. I’ve been to Vanderbilt, I’ve been to Cleveland Clinic, Johns Hopkins. They all agree something is causing my problems, they all agree I have abnormal test results. That I have small fiber neuropathy, autonomic dysfunction, chronic migraines, fibromyalgia, IST, NCS.. But you know what?? Those don’t define me. I’m more than my illnesses. If he became too angry, or depressed in seeing that, that’s his problem. I could only fight his darkness for so long on my own.
So I say to you. Watch your words, for they are powerful. They can bring love, sadness, and anger. Love.. happiness. Let’s focus on our words bringing those out in people around us.
livingwithdys.com 
Just found your blog. My wife has many of the same symptoms as you. Just back from Mayo with recommendation to follow-up with Johns Hopkins ( we’re from DC). See you have been to JH–do you have any recommendations for doctors there? Thanks.
Patrick, Hello! I’ve actually been to JH quite a few times, I also have doctors in MD, and Northern Virginia.
At JH, I’ve seen: Hari Tandri for cardiologist and had a hard time getting in with neuro, apparently i’m a complicated case. 😦 If you email Laurie Bruch, she helps with scheduling appts with the correct doctors, she’s truly amazing. Her email is: abruch1@jhmi.edu. I see Dr. Lawrence Zumo in Silver Spring, he’s a neurologist and extremely knowledgeable, and was at NYU’s Autonomic Lab. I see Dr. Walter Atiga in Northern Virginia, for my heart and pacemaker. He’s been seeing me for 3 years and has truly helped me so much. He’s with Virginia Heart. I travel to Northern Va, and JH often just for my doctors. I wish you the best in this, it’s a journey, and a great support system is very necessary.