Please bear with me while I'm changing the layout of this webpage. I'm trying to make it flow a bit better, give people all the info they might want or need, and make it more accessible to those who don't have blogger. So far, I'm happy with what I've done today, but I have more changes planned. I'm hoping to have all the buttons working tomorrow (right now the paypal button isn't working, and I don't know why...).
I'm happy that all the other links work. Please take a look at what I've posted here. I have a link to the left for the documentary trailer - the full documentary will be released to the public after the liver conference; about mid-November. The trailer is fairly rough (emotionally), so be prepared. The final film is a bit more fair to the positive/negative non-balance (it's not ALL bad...), but the irony is how much harder that can make it. I know from my own experience that I can love it when Mom is "Mom" again, for those brief moments...but it's heart-breaking and I wish she could be her again longer. It's almost cruel to me; to know that she'll slip back into her HE-fog again within a few minutes. But then I know that if she was horrible all the time, I'd have given up on her long ago. We are getting along a lot better lately. She's in a talking mode; we're talking everything out. Almost....can't expect perfection, right? Another link that works is the one to the American Liver Foundation. Learn about HE, the symptoms, how to keep your own liver healthy, and please give a donation. Education is key to prevention, and research is key to treatment. Right now, there are only 2 medications on the market that treat HE. And they don't always work. We can do better!
Tomorrow (rather, today, by the time I post this), we have what should be a simple appointment with a podiatrist. I have no idea what she told the doctor at the last appointment that warranted this referral. Mom says she has to take a "foot test", whatever that means. I told her she'd pass because she has feet. :) I'd go by the caregiver's notes, as she was with her during that appointment, but that caregiver no longer works with us and took horrible notes. Long and detailed, but inaccurate. Lots of descriptions of what the doctor seemed to feel, but nothing substantial, like why a podiatrist is necessary. Yet another reason she's no longer with us. She wants to remain Mom's friend, but wants nothing to do with me because I fired her. Frankly, it creeps me out that she wants to hang out with Mom alone. She knows exactly how vulnerable she is, and how easy it would be to take advantage of her. She's already come over when I wasn't home, and the first thing she verified was that I wasn't home at the time. The idea that she's purposefully avoiding me to get Mom alone, when she's already so emotionally unstable, makes me want to ban her from the house. I don't have the power to do that, though, and Mom is begging me to trust her judgement. I don't know how to tell her that her judgement isn't what it used to be. There's a bit of my objective self that says I'm over-reacting, and I hope that's true. When you care for someone who's so ill and so easily confused and screwed over, you tend to get over-protective. But then, I'd rather her be safe than me be sorry.
This weekend's sale was surprisingly disappointing. For various reasons, a lot of my friends that were to show up in support couldn't, and it was quite windy. I think the wind stopped people from getting out of their cars, and marketing the shows right now is a learning experience. We're just not reaching an audience, but I don't know how to do that. I did get to meet a few peeps from the crafty online group I'm in, and that was awesome. I love that I live in a creative community, and being involved in that is great for me. The *people* were great, and it was fun, but the *sales* weren't so hot. I did make a little money (all for the caregiver...I'm a bit bummed that I didn't sell anything I made with my own hands, but I'm being sensitive), but it wasn't anything close to what I was hoping to make in order to place a bulk buy of the t-shirts. The next step is to send them to newspapers, radio stations, and tv talk show hosts. Mom wants me to send one to Oprah. I told her I would, but we have to make money to place an order first. I'm researching how to do this, which is part of the whole html thing. I know we can pull this off. We can raise awareness and get people to pay attention to this condition. We were chosen to do this because we *can* do it. After the show, I went home to lick my wounded ego, and Mom gave me a pep talk. She was so sweet! She promised we'd figure this out, one way or another, and told me that everything will be okay. She amazed me by saying that. After all this time being so negative and focused on what goes wrong or what could go wrong...we've been working with her to be more positive - and now she's schooling me on my pity pot!
I'll post more updates as things happen. Again, please bear with me as I change the look and functionality of this blog...if links are broken, I'm sorry! If images are weird or scrawl across the page, I do apologize! I'm previewing everything before I post it, but sometimes it doesn't publish the way the preview shows it should be. OH! Good news, though! A certified personal trainer who specializes in rehab/post-op patients stepped up and volunteered to work with Mom to keep her muscles from withering away. It is part of his ministry and he hopes to open a gym one day for at-risk youth. How great is that?
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