>Going to testify about the emotional, mental and fiscal costs of an Autism diagnosis today with a team of three other people. Promises to be an interesting day. I don’t mind talking to people. I do mind, if they don’t pay attention to what people are saying. don’t give us platitudes.
Wish us luck. 🙂Tweet #fighting4answrs
>It has been over a month since I posted an update. So much has happened.
David continues to do well in his placement. There have been a few incidents of violence, but nothing so major that law enforcement had to get involved. Started with family therapy sessions as well.
The big thing that happened is that I spent 6 days in the hospital. I had been sick off and on since Christmas 2010. First I had the heart event, then I had the TIA’s. well after the Fourth of July, I was feeling really run down. My wife took me to the hospital for a check up. During the drive down, my chest lit up with a pain I can’t describe. It went down my left arm and ended in my fingers. I never again want to feel that kind of pain. What was it? No idea. Seriously. According to all of the tests, I did not have a heart attack.
Yet something was wrong. While I was in the hospital they would frequently wake me up and give me nitro-glycerin and morphene. I couldn’t walk without assistance. I was shaky, alternating between very hot and cold. I was miserable.
They performed a number of tests, as they thought that maybe I had experienced another stroke. No, the MRI showed normal. They did a CAT scan of my chest. Output is 30% of normal through the left ventricle. More tests. They did a stress test, during which my blood pressure dropped to 80/62. They did an ultrasound of the heart, and determined that my left ventricle is enlarged.
During the six days, I had three different doctors, and two nurse practitioners. Most were honest enough to say “we have no idea what is wrong with you.”
One doctor, who my wife affectionately nicknamed Dr Moron went so far as to order a psychiatrict consult because it was “all in my head.” At one point, he was ready to discharge me. The nurse practitioner, my wife and the nurse on the floor all disagreed with that. Then he said that “it must be a problem with your colon.”
In the end, my wife flat out refused to take me home until we were allowed to see my reumotologist, who treats my Lupus. Bright and early the next day, when she doesn’t normally see patients I was wheeled into her office. We tested to see if it was the Lupus. No, the Lupus isn’t active. She reviewed the chart, asked me a lot of questions and then diagnosed me with Fibromyalgia. Plus I have an enlarged left ventricle in my heart, and weak adrenal glands due to long term prednisone use.
In the end, I am something of an anomaly in that most of the people who get Lupus and Fibromyalgia are women between the ages of 30 and 50. It is unusual to have either one of these two illnesses, let alone both of them.
So now, I am trying to get better. I am learning what my new limits are, and working on a disability application. I am seriously sensitive to light, and feel like a lazy man because all I do is sit in a dark room and rest 90% of the time.
David is due to come home around Christmas, and I find myself fearing how my body will react to the stress of his being back home.Tweet #fighting4answrs