A lot has changed since my last post. I did end up going to the Intense Outpatient Program (IOP) for one session last week. As soon as I got into the first session (one of four that day) I knew something didn't feel right. I guess I thought I would be treated by psychologists, but instead they were all social workers. There were just four patients, for which I thought there would be at least six or seven, and all they really did was give us stapled pieces of paper for us to read aloud to the group... like we all did when we were in grammar school. About 15 minutes into the session, I had a seizure. I turned to the social worker sitting next to me to tell her that I was about to have a seizure, I retrieved my VNS magnet from my pocket and started rubbing it over my chest. The next thing I remember clearly is the patient next to me educating the group that epilepsy patients were once burned at the stake. When I heard this, I bolted out the door in a bit of a confused rage. No one came to check on me.
After 15 minutes in the waiting room, my case worker came to me as she had been told what happened. They has no protocol as to how to deal with people with epilepsy, even though they told me that they've had patients in the past have seizures. They took my blood pressure (of all things) and called Sara. Needless to say Sara was very upset at the lack of concern, and at the lady who said that people like me were once burned at the stake.
We decided that this program wasn't for me. It was a group for depression, not a group for those with depression caused by illnesses. There was an epilepsy support group meeting last Wednesday at the Epilepsy Foundation in Chicago so we thought we'd give that a try. I couldn't believe how supported I felt. Everyone was just like me. They all had similar side effects like rage and depression and we went back and forth around the room sharing stories. It was so much fun. The hour went by so quickly, but it's probably because I was so interested in what everyone had to say. Very enlightening to know that there are people just like me... Epilepsy, depressed, cabin fever, jobless... they were all there, and with a smile.
Now looking at their schedule, there are groups just for men, a group for young adults, groups for family members, and even a social group that does activities around the city. I couldn't be happier at the potential that these groups have for me.
Today was an extra special day because I finally got to FaceTime my pen pal Jacqui from the UK. She also suffers from Epilepsy. It was a nice little conversation, simple and to the point, but it got the ball rolling for future conversations.
What a week.
Monday, March 16, 2015
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