http://dain.damodred.net/ No Title en-us "The bookstore represented to me all the learning I was lacking. I knew just enough to know that I could read a book a day for the rest of my life and still be woefully ignorant." -The Extinction of Desire by Michael Boylanhttp://dain.damodred.net/index.php?newsid=163 News Aggregate #1 July 18, 2008, 2:35 pm Walter asked about the parents' meeting. It went really well. Both groups really liked each other. It was a good time. I'm into my second week of new pills. The dose got upped again today. I feel a bit odd, but I have more energy it seems. That is always a really good sign. I have a new anxiety medication that hopefully won't put me to sleep. Goofy is okay, asleep is not. http://dain.damodred.net/index.php?newsid=162 News Aggregate #1 July 9, 2008, 1:39 pm Apparently the meds for anxiety break outs make me sleep for 16 hours. Not the effect I was looking for.http://dain.damodred.net/index.php?newsid=161 News Aggregate #1 July 5, 2008, 9:00 pm It has been finally warm enough out and my anxiety level is low enough that I can sit outside and read in the backyard. Yay. I saw my shrink yesterday, starting new meds. Should be a fun transition. I also got some pills that I can take when I'm crawling out of my skin. Calming is good.http://dain.damodred.net/index.php?newsid=160 News Aggregate #1 July 3, 2008, 12:11 pm I seem to wake up very depressed and it takes most of the day to get over. Then I go to bed and it all starts up again. It rather sucks. I'm sorry to all the people I haven't emailed and such. I just can't seem to do it. Maybe tomorrow night I'll make an attempt. I haven't been up to alot. But then, it is more than before. A couple of friends (that I met through Ian) and I try to do a mohttp://dain.damodred.net/index.php?newsid=159 News Aggregate #1 June 24, 2008, 8:44 pm Life is hard lately. Things seem all wrong. I'm struggling not to be depressed but it is not working. Usually when I'm depressed I write more. I can't write. I have a ton of emails I should write. Phone calls I should make. I can hardly touch the phone. I play WoW, I sleep, I read sometimes.http://dain.damodred.net/index.php?newsid=158 News Aggregate #1 June 24, 2008, 2:51 pm This past week I've been compared to an orchid, Ghandi and a caged tiger.http://dain.damodred.net/index.php?newsid=157 News Aggregate #1 May 25, 2008, 9:36 pm I got a different wheelchair, which is basically like the one I had except that it tilts back. I was having some pain sitting so this was the solution. Unfortunately, it has made sitting worse. I believe this is because the cushion I'm sitting on is totally worn out and I'm supposed to get a new one. I really hope this helps, but I don't know that it will, nor do I know when I get the cushion.http://dain.damodred.net/index.php?newsid=156 News Aggregate #1 May 6, 2008, 4:48 pm The van is back, or will be in a couple hours. I keep putting off doing things that are not hard to do. I feel like I am very behind in reading. I ripped out the afghan I was making and started a different one. Apparently I suck because I can't get that right either.http://dain.damodred.net/index.php?newsid=155 News Aggregate #1 April 11, 2008, 1:36 pm .. of danger and serial killers and random dudes with knives and torture and what the fuck is going on with my brain. I hope I get my van back today. It was in the shop due to someone rear-ending it. I was not in it at the time. Six month anniversary with Ian coming up. Where does the time go?http://dain.damodred.net/index.php?newsid=154 News Aggregate #1 April 10, 2008, 1:15 pm Someone said that my blog was dying of starvation. I'm sure it is. I suck at writing emails back to people and apparently writing here as well. I feel rather depressed lately and I'm not sure why at all. I am having troubles with my mom but I thought I was feeling pretty relaxed about it. I guess not. I finished a scarf I crocheted yesterday. I need to work in the endy bits but it is prehttp://dain.damodred.net/index.php?newsid=153 News Aggregate #1 April 8, 2008, 12:48 pm I am now hooked on ballet. I saw Carmen (yes it is also an opera) on Saturday night. It was spectacular. I have choked on food twice now in less than 2 weeks. First was a hot dog, then steak. I apparently love emergency rooms. http://dain.damodred.net/index.php?newsid=152 News Aggregate #1 February 4, 2008, 11:51 am I got my hair cut today. I rather like it, it's different than the last few cuts I've had. You can see pictures here. I've been feeling quite crap this week. I got that thing women get every month or so. I felt really run down and grumpy. Ian has been sick for over a week now; he went to the doctor they said he has bronchitis. So that sucks. Also, I think I have a bladder infection. Yay http://dain.damodred.net/index.php?newsid=151 News Aggregate #1 January 18, 2008, 2:40 pm Ok so I haven't written in ages. I'm sure most people have just stopped chekcing the page altogether. I keep meaning to update the longer I wait the longer the update has to be. Anyway, here goes. I am still working at the Kidney Foundation but I am now working from home (and therefore don't get paid, ah well, volunteering works). My life has changed alot in the last few months and I'd rahttp://dain.damodred.net/index.php?newsid=150 News Aggregate #1 January 12, 2008, 6:17 pm I can't quite recall the last time I updated substantially. I have a feeling it's been awhile. So let's see what I've been doing lately. I am now working at the Kidney Foundation until at least December. I'm still in the employee placement program, but it is a very good fit there for me. I've been doing mostly data entry. Apparently, their mailing list hasn't been updated in a very long tihttp://dain.damodred.net/index.php?newsid=149 News Aggregate #1 October 26, 2007, 4:14 pm My cat subscribes to the patting the face to waking me up. Funniest cat video ever. Or at least one of them. http://dain.damodred.net/index.php?newsid=148 News Aggregate #1 October 20, 2007, 6:19 pm What Be Your Nerd Type? Your Result: Literature Nerd Does sitting by a nice cozy fire, with a cup of hot tea/chocolate, and a book you can read for hours even when your eyes grow red and dry and you look sort of scary sitting there with your insomniac appearance? Then you fit this category perfectly! You love the power of the written word and it's eloquence; and you may like to read/write poetry ohttp://dain.damodred.net/index.php?newsid=147 News Aggregate #1 October 8, 2007, 6:08 pm I made an album of stuff I've crocheted. So far not much in there but every time I make something new I'll add more pictures. http://dain.damodred.net/index.php?newsid=146 News Aggregate #1 October 4, 2007, 4:22 pm Tool is coming to Saskatoon!!! Omg, that was seriously unexpected and I'm totally going if I have to wheel myself across town to the venue. Next tattoo a week from Friday, woohoo.http://dain.damodred.net/index.php?newsid=145 News Aggregate #1 October 3, 2007, 12:21 pm Very tired today. It's been a busy week Today I got a new tattoo and I'm very excited about it. You can view pics here. It took just over an hour and yes it hurt. Totally worth it though.http://dain.damodred.net/index.php?newsid=144 News Aggregate #1 September 14, 2007, 4:36 pm I know I haven't written in forever and I do plan a nice big fat entry, I just have to actually do it. I'm off to work in 5 mins so here is a rant about the weather. August was basically a bust weather-wise. It rained and was bloody cold most of the damn month. I hate when my summer is cut short. I got only 2 months this year. September seems to want to skip fall entrirely and move headlong http://dain.damodred.net/index.php?newsid=143 News Aggregate #1 September 13, 2007, 11:31 am I am too tired to write anything particularly interesting or longer than a paragraph. I just wanted to point out that I am selling some stuff on Ebay. I've been going through stuff that I don't really need or want anymore, and I haven't gotten everything I want to get rid of I'm sure, but anyway. Here is the link to my stuff. Feel free to bid on it, heh.http://dain.damodred.net/index.php?newsid=142 News Aggregate #1 August 18, 2007, 8:53 pm Friday, August 3rd: I got the van!! Woo! My parents were supposed to head out for holidays on Thursday, but they postponed the trip until today so they could take me out in the van first. We went to my Aunt's house to show it off to her. She was very impressed and super happy for me. After that we came home and my parents took off on their trip (finally!). In the afternoon my caregivers tohttp://dain.damodred.net/index.php?newsid=141 News Aggregate #1 August 10, 2007, 1:53 pm I got my nose pierced on Tuesday. I had meaning to get it done for awhile, and I finally got another opportunity. I was going to do it awhile back but I forgot my ID. There will be pics once it looks presentable. Today it looks pretty good. Sore though. The van has had another delay. Shock! I was supposed to have had it Wednesday but the head guy ended up in the hospital. I didn't get thttp://dain.damodred.net/index.php?newsid=140 News Aggregate #1 July 26, 2007, 11:24 am This is the angriest kitten I have ever seen. What a look. Everyone asks me what my plans are when I get my van. I have no plans. When I get the van I will make plans. Seeing as I don't really know when I'm getting it or what I'll want to do that day it is hard to say what I'll want to do with it. I'm sure I'll think of something. The zoo is on the list. They have white tigers this year.http://dain.damodred.net/index.php?newsid=139 News Aggregate #1 July 22, 2007, 2:18 pm It's Friday and I have nothing to do and nobody to do it with and no money either. I have energy for once, I'd love to go out and do something with someone. Going to the bar would be fun, going out for coffee could be interesting. I don't know I'm totally restless and trapped and I feel like FREAKING OUT. In other news, I finished a book called Next by Michael Crichton. It was very good anhttp://dain.damodred.net/index.php?newsid=138 News Aggregate #1 July 13, 2007, 6:56 pm I had a really bad day yesterday. No reason for it, I just felt trapped, frustrated and lonely. I found an ex of mine on Facebook and because I have a curiosity problem I emailed him. He looks good and is apparently doing well. Just like all my exes. Now, I'm dreaming about him. My mind can be very cruel to me. I had a thought yesterday. I was wondering, would the world be a better plachttp://dain.damodred.net/index.php?newsid=137 News Aggregate #1 July 9, 2007, 2:00 pm It was very hot out today and it is supposed to be warmer tomorrow. Yay! My dad and are going to catch the new Die Hard movie tomorrow. I think I'll bring a sweater for the theater. I swear they think people need to be refrigerated. I take it back about Frank Rich being crap. I really enjoyed the book. Very witty and thoroughly entertaining if you like that sort of action futuristic type http://dain.damodred.net/index.php?newsid=136 News Aggregate #1 July 5, 2007, 7:29 pm It was pretty windy today but I still sat outside. Just not as long as yesterday. My mom in staining stuff as well and it is smelly. Ick. Did I mention protein drinks are expensive? Ah well, so is everything else. Marcin says he finally fixed the bug that would take a apostrophe. Let's see shall we. Everyone is down on MMOs lately. I'd just like to say I still like and play WoW. So therhttp://dain.damodred.net/index.php?newsid=135 News Aggregate #1 July 4, 2007, 5:47 pm It's been hot the last couple days and it's supposed to be hot all week. I shall be outside all that time I think. I love to sit outside and read. Unfortunately, this also means mom has the air conditioning on. If you need anything refrigerated our basement would be the perfect place. I have a space heater on in my room right now of all things. I went shopping today. I bought a protein drhttp://dain.damodred.net/index.php?newsid=134 News Aggregate #1 July 3, 2007, 9:17 pm We called the place that is converting my van and they said it'll be 3 more weeks until it is done. That'll make it about mid-July. So much for the end of this month. Blah. It was supposed to be nice enough to sit outside today but the weather people lied again. Big shock. Ah well. I got my new hard drive. It is working well and will fit enough stuff to last me the rest of it's life http://dain.damodred.net/index.php?newsid=133 News Aggregate #1 June 28, 2007, 1:00 pm Ok so I just got this external hard drive. It was a very good price, and while not highly rated on cnet, those who liked it really liked it. So, um, now I feel panic, as I always do when I spend money. If anyone would like to reassure me about my purchase, please feel free.http://dain.damodred.net/index.php?newsid=132 News Aggregate #1 June 19, 2007, 4:28 pm I had an appointment at Partners in Employment today. It went really well. They are nice people... I always feel so bad about talking about my limitations and they said I should never apologize for things. It was reasonable and the way things are. I worry about what new people I meet are going to think I guess. So, I am going to try out their employment placement program. It's a 6 month proghttp://dain.damodred.net/index.php?newsid=131 News Aggregate #1 June 12, 2007, 8:15 pm I got my hair cut today. I cut it shorter than it has even been in my life. I brought a picture of how I wanted it to look. The hairdresser looked at the picture more than once. She did cut it short and got the front right. However, the picture is clearly of a haircut that is straight. She insisted on emphasizing the curl in my hair. I did not want that. My mom even said, she'll want it sthttp://dain.damodred.net/index.php?newsid=130 News Aggregate #1 June 7, 2007, 10:33 pm Today my Mom purchased the van. I put some pictures up in my picture gallery. She brought it home so I could see it before it was taken to be converted. It's a very nice van. I thought it was silver but it's more of a steel blue/grey. It's called Butane Blue. I am thrilled that the van is purchased and is really on it's way to being mine. We should have it by the end of the month. I can'thttp://dain.damodred.net/index.php?newsid=129 News Aggregate #1 June 6, 2007, 3:00 pm I would be outside except it looks like it's going to rain. Rain is bad for electric wheelchairs and respirators, go figure. There are no pictures of out of doors yet either. (Though there are a few new pics up you can check out). On Saturday when I would have taken some my parents stole my camera. All the batteries were dead my dad's camera so they took mine to the wedding they were going tohttp://dain.damodred.net/index.php?newsid=128 News Aggregate #1 June 5, 2007, 2:49 pm Sorry about the page being down for a few days. If anyone noticed. My friend who hosts it was moving so everything was down for a bit. I was really worried last night that I had a blood clot. My leg was really sore and it looked a bit swollen. It has hurt for awhile, but I thought it was from sitting. This morning it didn't hurt at all and I've been keeping my leg straight (instead of flhttp://dain.damodred.net/index.php?newsid=126 News Aggregate #1 June 1, 2007, 7:01 pm This girl (I assume it's a female) randomly messaged me on Yahoo. It's a very odd conversation. Also, I don't plan to try this the baking soda idea, but if you do feel free to let me know how it goes. This does get fairly gross and explicit towards the end. She talks about a fun experience she had with her dog. I don't really comment much til I hear the story. I never did get to figure out whttp://dain.damodred.net/index.php?newsid=125 News Aggregate #1 May 24, 2007, 7:14 pm It's like paradise being stabbed in the butt with a fork. -Zsuzsi Gartnerhttp://dain.damodred.net/index.php?newsid=124 News Aggregate #1 May 24, 2007, 4:56 pm Last week was kind of a rough one. My mom was very upset and wouldn't tell me why, but then she sent dad down to tell me she didn't want to lift anymore. This was apparently a result of her getting a job and not wanting to be home for the hours of the day I need a transfer. In any case, the alternative is to use a sling, which is difficult, time consuming and brings my legs up to put pressure ohttp://dain.damodred.net/index.php?newsid=123 News Aggregate #1 May 3, 2007, 8:33 pm My sister and her boyfriend were here for dinner so that was fun. My sister and I talked about all the new and exciting reasons my mom is weird (we do that every time). Apparently my mom is now best friends with the live-in caregiver. I don't know either. Here are a couple of kitty pics for those who asked for more. Salinger and Bianca have a new ritual of playing together on my bed right befhttp://dain.damodred.net/index.php?newsid=122 News Aggregate #1 April 22, 2007, 10:17 pm Someone fucked up on the application for the funding for the van so it was turned down at the meeting on Saturday. So we have to re-apply, again, and the next meeting isn't until May 14th. So, I probably won't have the van until July or so. The appointment yesterday went alright. It was really tough getting up early and I'm exhausted today. I'm getting a new type of wheelchair though. Theyhttp://dain.damodred.net/index.php?newsid=121 News Aggregate #1 April 17, 2007, 9:46 pm So the appointment wasn't today and it's not til the 16th. Woohoo. Being wrong in this case is a good thing. At least until the 16th rolls around. An update as to the van fundraising. We have about half the money so far and the van has been purchased. More like reserved really because we haven't put any money down yet. It's on hold until we hear about the funding for the conversion, and thttp://dain.damodred.net/index.php?newsid=118 News Aggregate #1 April 10, 2007, 2:30 pm At first I didn't want to update because it would bump down the letter and then I always thought of something to write when I wasn't at the computer. Depression is better sometimes, worse others. I sleep more than I did, which sucks. I hope I don't end up sleeping my life away. My dreams are so real and emotional. Sometimes I don't want to wake up and when I do it's disorienting. It can fuhttp://dain.damodred.net/index.php?newsid=117 News Aggregate #1 April 9, 2007, 8:48 pm We made up this letter to send to various people (family, friends, businesses) to ask for donations so we can buy a van that can be converted to wheelchair accessible for me. Most everything is explained in the letter. I will not be leaving my address in the letter, however, you can email me to ask for it. I'm going to stick a Paypal link up here as well, just in case people want to go that rouhttp://dain.damodred.net/index.php?newsid=116 News Aggregate #1 February 17, 2007, 6:43 pm So I had to turn off my shoutbox because of spam. I always wondered when they were going to find me and it turns out it's more annoying than I thought. I accidentally deleted a couple of legitimate comments when deleting spam, so sorry about that. The kitten is doing fine. She seems more goofy all the time and she zooms around everywhere. Unfortunately she brought home some kind of virus. http://dain.damodred.net/index.php?newsid=115 News Aggregate #1 February 17, 2007, 1:04 pm It's been a long time since I've written and the longer it gets the more stuff that happens and the more work it seems like. I suppose I should start though and then hopefully I'll go back to more regular updating. That's the plan at least. My depression has been kicking my ass this winter. Partially becaue I don't leave the house very much. It's hard to get or afford transportation and thhttp://dain.damodred.net/index.php?newsid=114 News Aggregate #1 February 3, 2007, 3:40 pm I just finished the book Hegemony or Survival by Noam Chomsky. Reviews called it a scholarly resource and it is very well referenced. This is why I find the contents very dismaying. If even half of what he says is true, and I believe it's all grounded in some truth then the United States is in fact the biggest obstacle to peace in the world. It amazes me how much terrorism it has perpetrated anhttp://dain.damodred.net/index.php?newsid=113 News Aggregate #1 December 15, 2006, 2:39 pm Last night we had a tiff with one of the caregivers. She was apparently upset that I sometimes take an extra few minutes on the computer and she has to wait for me to get ready for bed. She also ended up lying about some stuff. She called a little meeting between her and my parents and I. My dad ended up getting mad at her, and my dad NEVER gets mad. She came within a small inch of being firehttp://dain.damodred.net/index.php?newsid=112 News Aggregate #1 December 11, 2006, 2:18 pm I went through a bit of a depression there, what with all that had happened and I didn't feel like writing at all. I'm feeling a bit better now though so... I started this vocational assessment dealy a couple weeks ago. It basically assesses all the skill you may have and relates them to the job market to see what kind of job you might be suited for. They do different sorts of tests, intellhttp://dain.damodred.net/index.php?newsid=111 News Aggregate #1 November 3, 2006, 4:53 pm So another bladder infection. Hopefully these antibiotics take care of it. I've had my period for 8 days. Make it stop. I must stop dreaming about my ex. It's driving me nuts. I don't like it. Forgetting is better. I've dreamt twice that my cat had near fatal accidents and once that I lost my pinky finger somehow. It's been way too long since I was kissed or touched or had sex. Druhttp://dain.damodred.net/index.php?newsid=110 News Aggregate #1 October 2, 2006, 6:36 pm Today my mom called the doctor in Calgary that was the doctor really in charge of the clinical trial. She talked to him about how the enzyme wasn't helping and how we are having trouble getting the dose upped. He said basically that my muscles are probably too far gone for the enzyme to work and that doubling the dose may or may not do anything. In any case, Genzyme doesn't want to double the dhttp://dain.damodred.net/index.php?newsid=109 News Aggregate #1 September 20, 2006, 1:03 pm The brunch was really good. The food was awesome and Tami met this guy at the buffet and he chatted us up at our table and then gave her his card. I swear she can meet men anywhere. The movie was alright. It wasn't spectacular and I thought it would be more of a thiller but it was still good. Kind of a 50s style murder mystery. Time for social services yearly review. I hate them with a phttp://dain.damodred.net/index.php?newsid=108 News Aggregate #1 September 19, 2006, 12:15 pm On Tuesday I went to this Avon display of Christmas stuff. It was pretty nice and I saw these boots I wanted to buy. They were even nicer outside of the brochure. I can't wait to get them. It was downtown so afterwards my sister and I decided to go for supper. It felt very odd to do something completely spontaneously. Good though too. Tomorrow I'm going for brunch and then movie. I don'http://dain.damodred.net/index.php?newsid=107 News Aggregate #1 September 16, 2006, 2:28 pm Or in ths case, the wasp. These were taken in our backyard. The spider had a big web between the garage and a potted plant.http://dain.damodred.net/index.php?newsid=106 News Aggregate #1 September 8, 2006, 7:09 pm We have a new person living with us. Mom took in a girl who is in grade 11 and wanted to live in the city (her parents live on an acreage) so she could go to school with her friends. She seems nice and goes back home for the weekends. We had a staff party on Friday. It went really well. We all got kind of drunk (some more than others, and for once I wasn't the drunkest, haha). My mom madhttp://dain.damodred.net/index.php?newsid=105 News Aggregate #1 September 4, 2006, 4:26 pm I went to the salon yesterday to get my hair done. It's only the second time in my life that I've been in a salon I'm pretty sure. The guy that did my hair was very nice and very hot. It's too bad he was married, I would have really liked to have taken him home. Anyway, my hair was past my shoulders heading towards the middle of my back so I was nervous about getting it cut. He did an awesomehttp://dain.damodred.net/index.php?newsid=104 News Aggregate #1 August 27, 2006, 5:20 pm Antibiotics make me tired. Yeast infections are EVIL. World of Warcraft is still fun. I think I'll go play to make myself feel better. Yes, good idea. Check out the galleries.http://dain.damodred.net/index.php?newsid=103 News Aggregate #1 August 18, 2006, 12:46 pm Marcin found this page so I fiddled around with it. I've only tried one picture so far but here are the results. In order they are in the style of Modigliani, Mucha, Manga and Botticelli. The original picture shall be placed in the picture gallery.http://dain.damodred.net/index.php?newsid=102 News Aggregate #1 August 17, 2006, 1:41 pm Friday night Tami, Carol and I went to Jax. I had thought we weren't going to be able to go because Tami was going camping but there was a last minute change of plans. Speaking of plans I had planned to drink less so I would have more memory of the night. It almost worked. This time more people were buying me drinks as well as shooters. I had a couple tequila shots and figured I would swithttp://dain.damodred.net/index.php?newsid=101 News Aggregate #1 August 14, 2006, 4:27 pm Yesterday I went to The Ex with one of my caregivers. It's basically like a fair with rides, games, entertainment, vendors selling stuff and music. We saw part of the lumberjack show, ate food (I had a frozen pieces of cheesecake dipped in chocolate, heaven!) and checked out the rides and the petting zoo. I didn't go on any rides of course, we just wandered around and looked at stuff. It was phttp://dain.damodred.net/index.php?newsid=100 News Aggregate #1 August 11, 2006, 1:41 pm I guess I should just summarize July since it's been so long since I've updated. I think this has been one of if not the busiest summers of my life. I've been shopping twice, out to two movies, to the zoo, to the bar (so far just once but we are planning for more), and just outside reading a great deal. I've also spent too much money but I figure I will make up for that by not doing a hell of ahttp://dain.damodred.net/index.php?newsid=99 News Aggregate #1 August 7, 2006, 3:33 pm I watched a documentary called Murderball. It's about quads that play wheelchair rugby. I wasn't sure what to expect, but it was awesome. The guys that play are so tough and have totally accepted their lives. It's not some sympathy story, or a story about hey look what we have overcome, it's about these hot athletes that are seriously competitive and play in a really cool sport. I would highlhttp://dain.damodred.net/index.php?newsid=98 News Aggregate #1 July 9, 2006, 10:21 pm Saturday night I went to the bar with a current caregiver and a former caregiver (same people I went out to dinner with). We went to a place called Jax. We weren't sure on the way there if it would be wheelchair accessible and it wasn't actually. Five stairs up, but the bouncers were feeling strong because when Tammy went in to ask if they had a ramp somewhere they said they'd carry me in. Thttp://dain.damodred.net/index.php?newsid=97 News Aggregate #1 June 26, 2006, 1:33 pm I haven't written here mostly because I just haven't felt like talking about it. We have a new goal of getting me to live on my own. My parents and I went to a meeting with a woman and her daughter who had done it. She has a house and a live in caregiver. It can take a few years to get everything together, however. First of all the live in caregiver will probably come from a place like the http://dain.damodred.net/index.php?newsid=96 News Aggregate #1 June 10, 2006, 2:13 pm I had no idea a hamburger could depress me to the point of tears, but it did. I was having trouble eating it and in the end gave up and had ice cream. I felt embarrassed and depressed because this meant that not only was the enzyme not improving me, it appears it has not stopped progression either. This is very very scary for me. I asked the doctor if the dose could be doubled as there are stuhttp://dain.damodred.net/index.php?newsid=95 News Aggregate #1 May 10, 2006, 12:08 pm Myozyme approved in the United States.http://dain.damodred.net/index.php?newsid=94 News Aggregate #1 April 29, 2006, 12:00 pm It's been awhile since I updated and I'm not even sure what to say here. My enzyme therapy has been put off for almost a month because for some reason the meds were held at customs. One morning we actually go to the hospital before we found out it wasn't in, which rather pissed me off. Anyway, it's in now and I'm going next week. My next shrink appointment is also next week. Should be fun. Ihttp://dain.damodred.net/index.php?newsid=93 News Aggregate #1 April 26, 2006, 10:12 pm So I haven't really been able to fall asleep before 2am for the last week or so. I have no idea why this is. I bought an iHome (radio/clock/alarm that you can stick your iPod in) hoping that music would help. It didn't seem to help though the music is relaxing. I've tried taking Ativ@n and that helps somewhat... I've always been fairly resistant to sleeping pills. Mostly they just make me highttp://dain.damodred.net/index.php?newsid=92 News Aggregate #1 April 16, 2006, 8:30 pm I need a sign to let me know you're here All of these lines are being crossed over the atmosphere I need to know that things are gonna look up Cause I feel us drowning in a sea spilled from a cup When there is no place safe and no safe place to put my head When you can feel the world shake from the words that I said And I'm calling all angels And I'm calling all you angels And I won't http://dain.damodred.net/index.php?newsid=91 News Aggregate #1 April 13, 2006, 12:47 pm Ok so the last time I went for my enzyme infusion (a week ago Wednesday) my blood pressure went up and up, So they figured it was probably the antidepressants I was on and so they cut them back in half. That really sucked because I was finally starting to notice a difference in mood. When I went to my shrink on Tuesday she said we'd have to try a different one. There was one that she wanted tohttp://dain.damodred.net/index.php?newsid=90 News Aggregate #1 April 8, 2006, 12:35 pm My normal response to the question "How are you?" is okay or not bad. Mostly because nobody really wants to hear how you really are and also because I don't want to talk about it. So far the pills are making me worse instead of better. Though that is to be expected while I'm getting used to them I think. I go from being exhausted to having this weird nervous energy that I have no idehttp://dain.damodred.net/index.php?newsid=89 News Aggregate #1 March 25, 2006, 1:37 pm So this is me as a tank, as drawn by Qui. Enjoy.http://dain.damodred.net/index.php?newsid=88 News Aggregate #1 March 12, 2006, 3:17 pm The procedure went ok. The doctor said everything looked normal. It hurt but it didn't take long and it's done so that's good. Talked to the lung specialist on the phone and he said he doesn't need to see me right away since the breathing is pretty much better. He still wants to see me and on a more regular basis but there is no rush unless things get worse again. I started my antideprehttp://dain.damodred.net/index.php?newsid=86 News Aggregate #1 March 9, 2006, 12:27 pm I only have one appointment now tomorrow, which is good. It's still the early one with the "procedure" thing. I am not looking forward to it, but hopefully it won't be too uncomfortable. It SOUNDS uncomfortable. I mean putting a camera up into your bladder can't be comfortable. It's not possible. Anyway, the lung doctor cancelled because my doctor that I've seen before is going to http://dain.damodred.net/index.php?newsid=85 News Aggregate #1 March 7, 2006, 9:36 pm Back to the emergency room last night because my breathing wasn't getting better. It felt slightly worse. They can't find anything so I'm going to a specialist on Wednesday. I already have an appointment to get a cystoscopy done that morning early (I hate getting up early) so it should be a damn fun day. I am tired of doctors and hospitals and being tired all the time and not knowing what is http://dain.damodred.net/index.php?newsid=84 News Aggregate #1 March 6, 2006, 3:56 pm So my breathing got better on Sunday when I stopped taking the pills so I figured it must be that. Yesterday it got worse again though so off to emergency. I was there for 7 hours. They figure that my lungs are inflamed and that it probably wasn't the Effexor that caused it. I'd like to make sure of that before I try taking them again though. Anyway, they did a chest X-ray, took blood to makehttp://dain.damodred.net/index.php?newsid=83 News Aggregate #1 February 28, 2006, 1:01 pm So I stopped taking the pills yesterday. The night before last I was short of breath and all day yesterday. It was a rather terrible feeling. I phoned the pharmacist to ask what I should do and she said to stop taking the pills to see if they were what was causing it. Since I'm fine breathing-wise today I'm gong to assume it was the pills. I shall be calling the doctor on Monday to see if shehttp://dain.damodred.net/index.php?newsid=82 News Aggregate #1 February 26, 2006, 5:15 pm So far my fun filled side effects include nausea, dizziness (sometimes the room spins around quite a bit), a fuzzy head, headache, tiredness, sort of a general anxiety and twitchy legs. I also have some trouble concentrating, though I'm not sure if it's much worse than it was before. I am not sure how long this will last, could be a few weeks. I get the medication upped 4 times over the next fohttp://dain.damodred.net/index.php?newsid=81 News Aggregate #1 February 24, 2006, 8:42 pm The shrink I saw today is the first non-counsellor type I ever saw and was the first one to prescribe me meds (well her boss was, she was still doing her PhD or something)... so she knew me from way back. I think I saw her for maybe 2 years. Anyway, we were catching up and talking about when I was living at the hospital. She had said that the ward had called her because I was drinking. It toohttp://dain.damodred.net/index.php?newsid=80 News Aggregate #1 February 23, 2006, 9:25 pm I started back on anti-depressants today and boy do I feel crappy. It's been awhile since I started or switched these kinds of pills, but I do recall the side effects very well. Especially because I'm experiencing them all over again. Fun! I also remember what it felt like to start taking them originally: defeated. Even though I know I need them, I hate to concede I need help. I'm going backhttp://dain.damodred.net/index.php?newsid=79 News Aggregate #1 February 23, 2006, 7:26 pm On Thursday I'm going back to see a shrink and I plan to ask for anti-depressnats. I'm vaguely nervous about the whole thing. Possibly the side effects that tend to last for a week or so. It could also be that I'll have to talk about myself and all the things I think are wrong and what I want to fix and that's kind of scary. I finished the Count of Monte Cristo. It was 1462 pages long, whichttp://dain.damodred.net/index.php?newsid=78 News Aggregate #1 February 20, 2006, 8:13 pm I feel weird and upset lately. Like maybe I'm collapsing in on myself. I'm more distracted. I have no idea how to deal with this.http://dain.damodred.net/index.php?newsid=77 News Aggregate #1 February 12, 2006, 2:46 pm Another thing I forgot to say about school in my last post was that it is fairly consuming. Even one class can be alot of work, and if I actually go to a lecture twice a week I'm not sure I could keep up with the physio. A correspondence might be okay, but I don't like that nearly as much as going to lectures. So it's a bit of a choice, and the choice at this point kind of has to be the physio.http://dain.damodred.net/index.php?newsid=76 News Aggregate #1 February 7, 2006, 4:41 pm I have a harder time keep track of what day it is and the date, forget it. I find this slightly worrying. Though sometimes the days and even weeks blur together. I feel like I'm wasting my life sometimes and it's very frustrating. I think about going back to school, even taking an at home class. I just don't know if I can do it. Sometimes I'm not even sure what the point would be. I'm seehttp://dain.damodred.net/index.php?newsid=75 News Aggregate #1 February 6, 2006, 8:40 pm So my Mom told Sam's mother (the boy that started the fire) what happened yesterday. She had been in England for two weeks. Anyway, the response was slightly unexpected. Instead of apologizing and offering to pay for part if not all of the insurance deductible (which I think would be the rational, reasonable response, I could be wrong) she verbally attacked my Mom. First she said that she wouhttp://dain.damodred.net/index.php?newsid=74 News Aggregate #1 January 26, 2006, 2:06 pm My Mom has been babysitting her friend's kids off and on (their Dad was home 4 days, they wen to a different friend's for the weekend) for about 2 weeks. They are boys 5 and 12. Yesterday, Mom went to get groceries, so she left the five year old here with me for about an hour. So, I'm just sitting in my room and all of a sudden the fire alarm goes off. What the fuck?! So I start towards my dohttp://dain.damodred.net/index.php?newsid=73 News Aggregate #1 January 24, 2006, 12:01 pm So I found out the night before last that my ex-fiance got married in November. I found it to be upsetting news. We broke up six years ago and I don't want to be upset about it, but there it is. I guess it is because he has completely moved on now, and because even though I'm over him I haven't moved anywhere. I'd like to show off a happy (if not successful, does being a mailman count as succehttp://dain.damodred.net/index.php?newsid=72 News Aggregate #1 January 17, 2006, 11:57 am My laptop is still in the shop, but last week I bought a new desktop. I forgot my user name and password for this so I had to get Marcin to change it for me. The new computer is pretty sweet. The specs are: AMD 3200+ Leadtech NVIDIA 6600 1 gig RAM 80 gig hard drive Sound Blaster Audigy 2 Sound Card 17" Flatscreen Moniter It plays the games I have like a dream and the moniter is http://dain.damodred.net/index.php?newsid=71 News Aggregate #1 January 14, 2006, 9:48 pm I have to send my computer in to be fixed. For some reason it keeps shutting itself off when I'm playing games. I'm not sure how long it will be gone, but I probably won't be around much when it is.http://dain.damodred.net/index.php?newsid=70 News Aggregate #1 January 5, 2006, 1:04 pm So I had to put my cat, Darwin, down today. He was getting frequent bladder infections and the vet had said the last time that we put him on antibiotics that it was the last try. If he got one again that we'd have to put him down. I thought he was doing really well yesterday, he was playing and happy. Today though he was in the litter pan about 5 times in a row. I thought maybe he had a blockhttp://dain.damodred.net/index.php?newsid=69 News Aggregate #1 December 31, 2005, 2:53 pm I keep thinking I should write here. I'm at Parkridge and I have the internet this time. I keep wanting to describe this place, the horrible food, the ugly room, the people who live here and the staff who work here... I just can't quite bring myself to do it. I've talked to a few people about immediate things that go on, but I don't really have a desire to describe it. Maybe because I've donehttp://dain.damodred.net/index.php?newsid=68 News Aggregate #1 December 22, 2005, 9:04 pm My grandpa died tonight. I'll probably be going to Parkridge on Monday. Just thought people would want to know.http://dain.damodred.net/index.php?newsid=67 News Aggregate #1 December 17, 2005, 8:07 pm The night before last I realized there is something I can't do anymore. I used to be able to turn partially over onto my back when I was laying in bed. Apparently I can no longer do that. I tried again last night to make sure it wasn't a position thing. I noticed the last month or so that my right leg was hurting when I lay on my left side. I thought that maybe the muscle that goes from my bahttp://dain.damodred.net/index.php?newsid=66 News Aggregate #1 December 15, 2005, 12:59 pm Last night we noticed that my cat Darwin was shaking. He is prone to bladder infections and had just finished antibiotics for one a few days ago. We took him to the vet today because of the shaking and also because he was still in the litter pan a great deal. The vet said he didn't know what the shaking was; it could be seizures. The excessive peeing might be diabetes. They gave him pills to http://dain.damodred.net/index.php?newsid=65 News Aggregate #1 December 13, 2005, 3:46 pm So I'm back from Parkridge. It went as well as could be expected. The place is still severely understaffed (one wing has two attendants for 14 people) and full of stupid policies and people. Not to say there aren't any nice people either. Anyway, I didn't have the internet for the entire week so I was fairly bored. I read alot and watched TV. The food is still terrible. I forgot about the fhttp://dain.damodred.net/index.php?newsid=64 News Aggregate #1 December 12, 2005, 3:19 pm So today I had a minor procedure thing where my stomach tube got changed again. No big deal, but it is done in an operating room with a surgeon so I thought you'd all want to know. Or not. Tomorrow I am going into Parkridge for a week and a day. Feel free to feel sorry for me at this point. My mom is going to Kelowna to visit her dad because he's dying. I may or may not have the internet ahttp://dain.damodred.net/index.php?newsid=63 News Aggregate #1 December 1, 2005, 3:29 pm Missed me missed me now you've got to kiss me If you kiss me mister you must think im pretty If you think so mister you must want to fuck me If you fuck me mister it must mean you love me If you love me mister you would never leave me It's as simple as can be! - Missed Me by the Dresden Dolls http://dain.damodred.net/index.php?newsid=62 News Aggregate #1 November 29, 2005, 4:37 pm As most people who read this page know, I have a rare form of Muscular Dystrophy called Pompe's Disease. Most people also know that I started treatment for this disease (enzyme replacement therapy) in a clinical trial with a new drug called Myozyme. This drug has not been approved yet so the drug company pays for it so far, however, when it becomes approved I don't know if government health carhttp://dain.damodred.net/index.php?newsid=61 News Aggregate #1 November 22, 2005, 4:21 pm This is partially in answer to Walter's comment on the below entry but also kind of a rant in general. First of all, we don't hire from an agency, we hire privately. I used to get care from Home Care, a government funded agency. With Home Care they choose the hours (how many and what times), who they send in and what the people did when they got here. We switched to another government fundhttp://dain.damodred.net/index.php?newsid=60 News Aggregate #1 November 17, 2005, 12:58 pm