12.25.09 (5)

I've been talking to people who are in similiar situations as me, and I'm trying to find out about issues with working. Most people with residual effects from Encephalitis are on disability. I've also learned that Encephalitis is called "the invisible illness" because sometimes it's hard to tell there's anything wrong with the person who has it, unless you talk with them for a while and/or spend a good amount of time with them. I know this to be true. I was able to hide my problems at work just fine. I was there in the evenings only, and only for about 5 hours at a time. It was fast-paced so there was no real time to talk to anyone in deep conversations. I wasn't working one-on-one with anyone. And talking to the customers was easy, although they would come back sometimes and comment on something we talked about days before, like the product they bought, and how much better they feel, and thank you.... and I would just go blank, and nod in agreement, and say you're welcome! When I had no idea what we talked about, or what I talked them into buying. I honestly feel that I could continue to handle a vitamin job if I were not standing up and working out all day. I know a place where I could do that, but it's small, and you work alone, and last time I worked there I was robbed before my very eyes. That, and the Mafia Man incident. If I could be there with someone else all day it would be a piece of cake. I need a bodyguard. Some people on Hospitalspace keep referring to their "caregiver". I want one! But I want a Bodyguard instead. I'd like one of those before a chef, even. A big huge fat man who just quietly watches everything. Black would be best.

So I'm learning that it's a common situation after having your brain infected. I've felt guilty all this time at my on & off again with work issues. And in my case it's not just my brain, it's my body. I wear out. I want to work from home. I do. I'm ready to start looking into that. Also, after talking with others in my boat, I've learned that it's nothing shameful if you need to get on disability. If you've worked all your life and you paid into the system, that money is rightfully yours, if you need it. The moral question is, if you truly need it. People have been trying to talk to me about it since this began, but I haven't been fully convinced I qualify. Even though at times, there's no doubt in my mind that I qualify. But then I feel fine again, and the very thought of getting a check in the mail from the government makes me laugh.

I learned that what they look at when people with neurological issues apply, is the results of the neuropsych testing. Which I had done! The neuro at Parkland referred me to the neuropsychology clinic at UTSouthwestern. I had the whole thing done. A humiliating test. The outcome was that I scored "ok" or "below average" in most areas, but my short term memory was "impaired". It was humiliating. The test actually made me cry. It's shocking to see what parts of your thinking aren't working, and the only way to find out is by testing those areas with puzzles, problems, quizzes, etc. I overlooked that testing and haven't thought of it too much, but now that I'm in this situation again, I'm reconsidering whether or not seeking disablility would be right for me, now. I do know this- I need a better foundation. Like I said before, each time I'm hit, everything falls through, the bills pile up and I have to fall on my family. I end up miserable and heartbroken and feeling worthless. A loss of independence, depression, lack of direction. I'm tired of the struggle. I'm up against a wall. I need a better foundation, my own safety net. So I can catch myself.

I am in the process of regrouping and making important decisions in my life right now. Choices that will affect my daily life, and my future. I never knew which way to go with this before, I was on a boat with no sails. I've decided to start choosing which way it's going to go. I've already got the faith. Now I need the direction and the ambition to do this right. I've learned the hard way, running from it is not an option. Therefore, I'm going through it. But I'm going to do it the right way now. I'm going to get that safety net in place. Then I'm going to figure out something I can do from home for a small income. A real job, not something I came up with. I'm going to stay in the medical system and get tested and what the heck- medicated if needed. I'm going to have a smile on my face and some money in my bank. Oh- and no more driving clunkers that die on me. The next car I get will be newer, and safe.

And that's not all. Last but not least, I want to find me a church.

I have quite a list for New Year's, don't you think? Are you jealous? Don't be. You probably wouldn't be able to handle being me. You have to be a true badass. Sorry.