Tuesday, July 14, 2009

Way too long and way too much

Well, I have been pretty much procrastinating and not adding to this blog due to the fact that there has been a lot of stuff going on. I will try to outline it:
1) Donations
2) New diagnosis
3) More disability fun
3a) Insurance
3b) Mood
4) Old friends
5) Summertime
6) Bartering
7) Mania
... I think I will stop here.

1) Donations: I have been building and donating computers for people. I finally gave some away and it is very fun, although, it is a bit nerve-racking. I give the computers to people, but then feel the need to teach as well. They really do not know how to use it and I just need to let it go, I guess. It is not in my nature, though.

2) My new neurologist finally figured out that Copaxone was no longer working for me. He came to the obvious conclusion that if you are progressing, hence disabled now, the the drug is no longer doing me any good. So, my diagnosis now is no longer relapsing-remitting multiple sclerosis, it is now secondary-progressive. Years ago a drug named Tysabri came out on the market and it was a once a month intravenous drug. I said that I would LOVE to take something once a month rather than every day even if it was an IV. Well, the drug was pulled from the market because people had died from taking it. I thought that was it then. I would have to take the painful daily shots forever. Well Tysabri came back out on the market when they figured out the cause. It seems that people were trying to take it in addition to their other shots and that was too much on the immune system. Well, that is now what I am taking. I have had one treatment already and I have another tomorrow.

3) Disability fun... no f-ing way.
3a) It seems like a cruel joke. My disability insurance company sends me what seems like a ream of paper forms a month to fill out and the same thing goes for my doctors' offices. Somehow a man with diagnosed memory issues is supposed to keep up on all the forms for me and everything that the doctors need, too. Talk about a cruel joke. Needless to say, this situation has not been working out so well and I have gotten into several heated discussions with those that control this escapade to inform them that it is generally not the greatest idea have someone with parkinsons carry the coffee... although they do think that I should remember every step and how for something that rival the tax code in level of complexity.
3b) On a more serious note, it is really hard to deal with not working. I am reminded that drawing a paycheck to not work is something that every white-trash bastard I have ever met sees as like winning the lottery. That is not me. I am used to working for my money and feel like crap if I don't. This type of thing is hanging over my head now, mentally. Everyone tries to reassure me that it is great to get paid for nothing, but that is just not in my nature. Plus, even with Social Security and disability insurance, I am still taking quite a hit in income. And, to top it off, I am not allowed to work legally and still retain my benefits. So, if I want to work a little harder to save up for a nice present for my wife or something, that is not allowed. In fact, get this, my disability insurance augments my income by taking the amount of money that the insurance covered me for and adjusting it so that they PLUS social security provide that amount. And, in another means of cruelty, they also take the reward that my children get, which is spelled out in Social Security rules as my children's not mine and the insurance company also takes that as part of it. So, basically, the more kids I have, the less money the insurance company has to pay me. Isn't that just nice. Oh, and NOW to the point I was trying to get to. I asked the insurance company if I could work part time delivering pizzas or something. The said SURE... I just needed to remember to send my pay stubs to them so they can deduct it out of what they pay me!!!! HUH??? I am not allowed to make extra money legally?? NO FRUSTRATION HERE!

4) So, I have been using facebook a little bit and low and behold a friend of mine who I have known since Kindergarden and roomed with in college and fell off the edge of the earth after that... over 15 years ago.... popped up on Facebook. Very cool.

5) It has been freaking hot around here... and it sucks for those of us who have multiple sclerosis around here.

6) I have rediscovered something that I am good at. Bartering. And, it has been booming since the economy is not doing so well. What I have been doing is trading computer work.. mainly building, cleaning and updating people's computers that do not work very well for them and they have been doing things that I cannot do anymore, like work outside when it is 90+ degrees out there. I have gotten a new wall built for computer repairs and what looks like a new patio going in for some computer work as well. But the coolest one is that a guy that is getting ready to be deployed to Afghanistan needed a laptop to communicate with his family while he is over there... and I came up with the BEST trade. He, being military, is used to having to shine the faucets and clean everything to a crazy level. So, what I need is my motorcycle detailed... there is a lot of chrome there to shine and nooks and crannies to clean out. For him that is just a normal-like thing, for me it is torture. A laptop is probably a bit much to pay for detailing a motorcycle that has always been garaged, but it is worth it to me to know that I helped out a soldier and his family as well.

7) Finally, I am tired of typing, but I have to mention that I am having a lot of problems sleeping. I have been doing an all-nighter about once a week these days. It is crazy and no one can seem to understand it. I have a bachelors degree in Psychology and that is even that is more knowledge than necessary to figure out what this is. It is mania and my doctors knew it was coming since I guess I am like this every summer.

Okay, I have written a small book and am tired of typing. Maybe next time I will go into what I am going to do with my time for the future.... To be continued.

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