A lot more praying to do

I’ve been readig CaringBridge for the last couple of hours almost. Well, I’m sad to say that Mara, the little girl I’ve been updating you on, isn’t making much improvement. She seems to be getting ready to start getting better, but instead whatever complications she got, suddenly takes her healing away. Basically, her healing is being suppressed by whatever viruses or other things that are at her. Her body takes a break, only to start up with medication side effects and other symptoms. So when I say that, she really isn’t getting better. She is simply trying to get well. Like climbing up a mountain but never getting any closer to the top. It’s very upsetting. She goes home, only to go to the hospital. And as much as the parents should be forcing the doctors to make plans for her to return home and only be re-admitted over serious issues, to me personally, maybe she should never have gone hone. I’m not saying the parents are at all wrong. Not saying that! I’m just saying that my own feelings are that Mara should have just stayed in, depressing as hospitals are. Unfortunately the hospital isn’t making her well, home life is comforting, yet not helping her get well. I’m so sad for her. Yet if she stayed in the hospital, maybe they could keep on top of things better. The ugly bit is that keeping on top of issues is just that: juggling. That’s all it is. She goes home, they juggle all of her symptoms to keep control of them. Lose one or more balls, then go to hospital. Same thing there. If you want to leave her a message or read her site or support her in any way, then go to http://www.caringbridge.org/visit/norton. She really needs everybody’s support. There are hundreds of kids and one or maybe a few adults who I’ve followed, who’ve died in one way or anotheer over the past four years. We can’t let her be one of the statistics! Some of the people I’ve followed are:
JP Peters, Cowboy DaNNY Hansen, Taylor Easterburg, Arron White, etc. There are too many to list. Some of these poor kids and adults have suffered terribly in their last days while others had a peaceful transition. Most people call death a transition, however I do not. Death is the end of one’s life, stolen away by an enemy who will not give it back. We’re supposedly selfish because we want our loved ones back. That’s a lie. Death is selfish for taking them! It has no right to take anybody, but sadly we’re all going to die some day. I don’t accept this. Death shouldn’t be taking anybody.

The other bad news is that my weight is increasing. I didn’t have complaints, and I still don’t really. My only one complaint is not fitting into clothing properly. So I’m thinking that since exercise isn’t fixing my weight gain, I may have to take all fat foods oout of my diet. Meat and vegies will be the only foods in my diet I think. Maybe the occasional soft drink once a week for a while. But that’s it. And if it’s a sandwich, not fried and fattening foods on it! Also, more exercise, even if I have to walk twice a day instead of just once a day. My plan isn’t to get very thin. It’s just to take off about five or ten kilograms so I can keep my usual sized clothes. That’s all I want. It means no more fish and chips, no lollies, chocolate etc. And only eat when I’m hungry. I may eat once a day, three times a day, or skip a day of eating. It’s not about starving for a set time, it’s all about only eating when I’m hungry and not because I have to. Just because it’s 12 pm doesn’t mean I must eat there and then. And just because everyone else is eating doesn’t mean I need a massive serving of food. Just a little snack will do, or nothing if I’m not hungry. I don’t need to eat because of anyone or the time or whatever. I need to eat because of me. I’m actually sick of fat food. What’s the point in eating fatty foods when they have no nutritional value? They taste lovely, but eating something which gives you no nutrition is pointless unless you’re eating that once in a blue moon for taste and pleasure, knowing that ninety-five percent of the time, you’re eating very good food. And, pretty healthy isn’t acceptable anymore. The food must be very healthy most of the time, not some of the time. I’ve got soft drink in the cupboard. Well, I won’t take any out of the cupboard till next week. I’ll continue to drink coffee though. I can’t miss out on coffee! And cereal: I can eat wheatbix and cornflakes, but not cocoa pops and other shitty horrible crap. Cocoa pops are the only cereal I like out of all the other frigging stuff. But wheatbix and honey crunch bytes are the other cereal I’ll go for, since they have less sugar. The other cereals aren’t worth eating. Not even Sustain, Saltana Brand, Sportss Plus etc. They’re all sugary foods to me. Same with energy drinks like Gataraid, Boost, etc. They’re no good. If I wouldn’t drink those drinks to cure vomiting, I won’t drink them now. coke is no good, but at least it’s better for vomiting, ironically! No, the only drinks I’ll have are doctor-approved ones like Pedialite, Gastrolite etc, which needs to be measured in correct dosages in a glass of tap water, to be drank only when you’re dehydrated or very unwell and would like to get in first before you dehydrate. Seriously though, I only took that Gastrolite shit once, on a plane because I came down wiith a bug and couldn’t just cancel the flight. Most of my life I’ve survived with Paracetamol and water, and anti-nausea medicine for two weeks after my eye surgery. Since then I’ve spewed up a few times, but ass oon as I’d taken Panamax, no more spewing up or very little if ever it got to that, and no nausea tablets. It just goes to show how healthy I actually am, to not need sports drinks to survive low-energy days and the occasional viral issues. Sugary stuff really isn’t necessary unless the doctor insists on it for some reason for temporary periods. So yeah, mostly healthy foods and hardly any soft drink at all until I get my exercise going a bit more and I get skinny enough to tolerate more junk food without gaining a lot of weight.

The other thing. My fridge is fucked. For some reason the motor has blown up so that only the freezer works. There’s no air-conditioning in the bigger section of the fridge. so now I can only fit stuff in my freezer and really pack it full so nothing goes off. And anything that does need refrigerating, needs to be cooked immediately and stuffed into the freezer if I don’t eat it all. I haven’t bought any eggs because they don’t freeze very well. I’d have to boil all six of them and eat the lot of them within twenty-four hours. That’s just going to make me very very fat. So I’m leaving the most perishable stuff out of my diet till I buy the occasional burger at the shops and until I get a new fucking fridge that works. Life is really pissing me off at the moment, but other than the fridge, life is fine. It’s just pissing me off by not giving a fuck about my need to eat whatever I want without having to buy the fucken stuff every day. I didn’t think a fridge would last for just six months. Goes to show that cheap fridges are useless pricks. I hate my God damn brother. All he has done is ruiin my life with the cheap fucking crap he has helped me to buy and no way to fucking damn friggen replace the items. Oh well. He’s not in my life anymore. I agree that paying a fortune for stuff isn’t a good idea most of the time, but buying cheap is just as bad when that shit isn’t gonna last long.

My uncle was gonna come around to check on the fridge to see if he could find anything broken. If he doesn’t come around by 4:30, I’m going for a walk to the shops. I have to withdraw some money for a child who is gonna mow the lawn this arvo, that is if he comes around to mow it. If he hasn’t, I’ll get the money tomorrow. My bank account is starting to run very low, so I’m gonna have to start telling a few lies to stop people from making up whatever excuses to take it off me. I’m a tight-fistedperson when it comes to my money. I don’t have a bank account so that other people can help themselves to my money whenever they see fit. Doing jobs just so they can have my money will be ok occasionally, but not all the time. On Friday when the carer comes around, I’ll be getting her to help me fill out a form for domesticcare at my house, but I won’t be buying lunch, other than one cuppa and that’s it. A can of coke is cheaper, but fattening, so coffee is better. I’m also not going to get Troy’s dog food or shampoo or tick stuff next week. I’ll wait for the pay week that is two weeks from next week. It means waiting for three weeks, but oh well. Actually, even if I get only the tick stuff next week. Only that. Dog food is important, but Troy staying alive is even more important than buying food when it has a while before it runs out. So I’ll get only the tick stuff next week. Any groceries I get will cost me fifteen dollars or less, because the rest of my stuff will be in the freezer. Fuck the fridge. I’ll get it next week when I have a healthy bank account. I’ll be getting a Travel Pass soon, so life will be even easier then. When I get a deep freezer, I’m going to buy a good deal of meat and freeze that, and freeze whatever meals I cook. It means I’ll only be spending twenty dollars each week on food and other items. Maybe even less than that. The trouble will start when I have to move into Public Housing. My O and M instructor has no understanding that my rent going up is gonna affect my finances greatly, and as much as she doesn’t want to re-start O and M all over again, she’s got no consideration for the fact that O and M training is not as important as saving money. I need money to live, I can live without O and M. I can’t wait for her to be replaced. All she cares about is me staying in one place so I can keep up with O and M training. Well, I’m not about to kill myself over one fucking travel route. I can replace training, I can’t replace me. She’s making me angry. If she doesn’t want to support me, then she can find someone else to work with because I’m not for unsupportive people. It’s not like I’m about to jump off a cliff just to get a public rental property. So she can fuck herself.

For tea tonight I’m just gonna have a boring sandwich. I’m not hungry because I ate so much stew today. I love stew a lot. I hardly ever use the crockpot, but when I do, I tend to eat the entire contents of it in a day. I only have one large container of stew in my little freezer. So I’m keeping that for a day when I have absolutely no motivation to cook at all. And I’m saving every last fucking cent. In fact from next week on, I’m putting $20 a week into an account, and in a few weeks, it’ll go to thirty dollars a week for a few weeks. Then I’ll leave that program for a while, whilst keeping other cash somewhere. Then in a couple of months after this little break, maybe I’ll put $50 into this particular account for a month. Then I’ll just leave it so the interest accumulates into it over three or four months. It won’t be hardly anything, but it’ll be something. The way people spend up for no reason is ridiculous, and I won’t be part of it. Last night I told the family that I might just start working. I hate reception work, but any job is a start. Putting effort into something I hate and getting some money, will be better than sitting down all day with nothing. Pention money is fine to a point, but it’s not helping me get a savings account going very well. so I think I do need a job. When, I have no frigging clue. But if I’m doing part time work, I would like to be earning at least ten to twelve dollars an hour. That will get me a hundred to maybe close to a hundred and fifty dollars a week, but that’ll be a good improvement! A fair amount of money on part-time work is better than a rip-off deal to me. I tell ya, that private school I was almost going to work for, was gonna give me practically no money. I’m a bit understanding that she couldn’t give me full rates for like three months. but a dollar more than what she was gonna pay me would have been better. Oh well. I’ll try again at working at some point, knowing that I won’t be flunking out because of hiding from horrible situations. None of that shit anymore. My biggest problem is that I probably won’t be able to take the guide dog. It’s upsetting. My thing is that if I can’t take the dog with me, I won’t go to that workplace. Don’t take the dog, don’t take me! My only reason for taking my cane with me on Thursday when I go to a disability forum, is because my Aunty loves dogs but hates taking them in cars. And I’m only going to these meetings and forums without my dog on an irregular basis. If it was happening all the time, I’d tell her I’m finding my own way home and that would be it. I got the guide dog so he could accompany me, not so he could stay home and rot while I cry my eyes out because I miss him and am used to having him with me because the fucking cane is no comfort for me. I’m angry with my instructor because she thinks that if I don’t use my cane, one day I’ll get upset and cry at her because I will want training to get somewhere when I can’t use the dog. Yet she forgets that I’m not the “other people”. I don’t take independence to an extreme like someone does, a particular person who I won’t name. I want to do my own thing, but I’m not to scared to say to a family member or friend that I’d like their help because I can do this or that on my own, but would find it cheaper to take the lift instead of the cab, or would find it easier to go with them than to try to concentrate on finding my own way for whatever reason. I mostly do things by myself. But sometimes I like to get people to help me. And because I don’t leech off others, people have no problem doing some things for me. Anyway, I say saying that my instructor has no idea that she’s hurting my feelings by what she says to me about needing to sometimes leave Troy home even if I don’t need to. I don’t agree with her, if I had to go to a meeting, I’d surely ask for someone to take me there or call in sick. It doesn’t bother me. Believe me, I’m mad but if my dog had to stay home and I had to go out, having a sick day would be nice for me. The instructor also has no understanding of the fact that just because I’m safe do do street crossings independently while someone’s watching me, I’m not safe alone. I need supervision while I’ve got the cane. She doesn’t care if I die tomorrow. I could demonstrate that to her too, I could just try my walk to the shops using the flimsy cane. The fact that I’m allowed to go with Troy but not my cane, says something to her. But she chooses not to hear it. I wasn’t confident with finding my way to the public toiletss in the shopping centre with Troy, because I will hardly go there anyway, and because she didn’t show me enough times while I had Troy with me. It has nothing to do with the cane, and she fucking well knows it but won’t admit it. She has no fucking idea. Does she want me to be an old person or something? Or does she not care that walking fast while using a cane is dangerous? So then I have to walk like a retarded, invalid, very old lady. Fuck her and fuck me. I won’t tolerate her old-school attitudes on disabled people.


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