Tuesday, April 27, 2010

A Day of Extremes

Everything so far today seems to be some kind of extreme, either good or bad.

When I went to the doctor the last time, she recommended that I talk to the people at NIH because they are doing some clinical trials for Paget's Disease, and I could get free treatment there. I tried to explain to her that without a car, this would entail nearly a whole day to get there and another day to get home, with probably some camping out overnight involved, and she didn't exactly say it was my problem, but didn't offer any solutions.

I've tried several times to get information about these mythical trials from their website, and there not only isn't any info, but they leave you with the impression that nobody in the whole building has a phone or an email address. After the fourth information gathering attempt today, I finally found an information phone number for them.

They don't do research (according to the woman I spoke to), but she referred me to the National Organization for Rare Disorders, who are also not giving out information about where to find doctors or trials. And they impressed on me how rare this disease is, and how few doctors actually treat it. If I can find a doctor, though, and can't afford the doctor or treatment, they may be able to help me with that. I guess that's a ray of light in the darkness.

So, I'm really bummed. Maybe I can try to find more information another time, but I'm so depressed about this that I just can't do it anymore today.

This is probably a bad time to do all this research, too, because I have an appointment with the ENT specialist tomorrow. That means probably no blog post tomorrow.

It also means that I'll get the results of the tests he gave me and the CT scan and find out if there is something they can do to help my right ear.

And now that the time approaches, I'm afraid they're going to say that there's nothing they can do, and I'll not only have no hearing in that ear, but have to put up with the pain, pressure and itching in that ear forever.

They said that there's almost no hearing problem that can't be helped with the right kind of hearing aid, but it would be nice to be able to hear something without an aid. For instance, if I sleep on my left side and there's a fire alarm or somebody knocking on the door, I'll never hear it.

So, tomorrow is probably going to include some news that is either really, really good, or really, really bad.


The good news is that it looks like (if everything goes well) I may have some money to take with me to the Sheep and Wool Festival!

The people I'm doing the game art for liked what I did and thought they'd told me that, but they hadn't. There is a smidge of work yet to do, but they're willing to send me a cashier's check for the whole thing right now. I'm thrilled.

So, I'm still entering contests for an iPad so I can get a copy of the game I did the art for on it.

Holly bought a Sony Reader a few weeks ago, and she loves it! I love the idea of it, and would like something like that, but it and the Kindle are both limited to black and white, and I'm not really happy with that. I thought I'd like an iPad better, and I probably would, because it can do a lot of other things in addition to displaying books.

I came across another reader that I like a lot. It's the Barnes and Noble Nook. It costs about the same amount as the Kindle, so it's more expensive than the Sony Reader that Holly got, but a bit cheaper than the Sony Reader Touchscreen model. But the Nook has color and a touch screen, and can let you play games and also access and send email. So it's kind of an option between the Sony Reader and Kindle on the low end, and an iPad on the high end. And about the same price as a Kindle or a Sony Reader Touch.

Then again, there's the cost of the actual ebooks. Changes is about ten dollars in hardback on Amazon. I paid $13 for it including shipping from them, but they haven't even got it listed as available for Kindle. Holly bought the same book for her Sony, and I think the price was about the same as the hard back, but, of course, there was no shipping. It's available for the Nook for about the $13 I paid.

Possibly the best news in all of this is that there will be a Nook application out sometime this year for my phone! So, all I have to do is wait a bit, and I'll be able to buy the software for hardware that I already own! Oh, and the Nook and Kindle software is also available for iPad.


My garment steamer, the thing that I use to block most of the stuff that I knit that needs blocking, is incontinent! Yesterday morning, when I got up, I discovered it had made a puddle on the floor.

I am thinking about fixing it, but I'm a little worried about fixing something, filling it with water and plugging it into the wall. I discovered that some steamers have drain plugs. Unfortunately, this one does not. I need a screwdriver with a long reach because the screws are recessed. I also want to give it a chance for some of the water to evaporate.

So I'll give a shot at fixing it later.


Merlin, the TV series, is just now coming on SyFy, and will be on this evening, and I want to go watch it!


I'm rambling, so I'll say goodbye for today, and try to put up a post on Thursday!

Have fun!



Here's something to cheer you up! It's a batch of photos of funny signs at zoos! this one is my favorite:

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