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June 22nd, 2008

10:46 am - Friends with girl babies I saw this dress and immediately thought of myolite and her sweet girl. My mom never finished the sweater (and she's 95% done! pisses me off) and I wish I could get this for her, especially since it's on such a great sale right now. If I had my way, I'd buy baby clothes for all my friends, girls or boys. They are such fun to dress especially if they aren't yours. http://www.gap.com/browse/product.do?cid=6436&pid=556768

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June 10th, 2008

01:15 pm - mmm There's something about a fresh haircut on my partner that just trips my trigger. Current Mood: horny

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February 4th, 2008

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January 24th, 2008

04:58 am - The accident and the implant For verin_the_brown: When I was in graduate school, I rode my bike instead of driving my car. I was hit by a 17 year old punk who accelerated from a stop where he was waiting to pull out onto the highway from a parking lot. I was knocked over onto my bike. I sprained my right wrist and my left ankle. This was August 8, 1997. I have hurt every day of my life since then. The pain is always worse, it never stays the same or gets better. It spread to my fingers and up my arm, hopping sides and blazing down my left arm. It spread across my upper back. I fear it is spreading across my chest. Breasts are supposed to feel good, not cause agony. It feels like you dunk your arms and upper back in boiling water, leaving you with the kind of burn that lets your skin slough off as you sluice cool water in an attempt to tame the burn. That's how it feels on a good day. There are actual physical changes in cutaneous innervation and vasculature, it's not just that there is a loop of pain. http://rsds.org/2/library/article_archive/index.html look under Epidemiology and Pathology, it opens up a pdf Author: Albrecht PH, Hines S, Eisenberg E, et al Title: Pathologic alterations of cutaneous innervation and vasculature in affected limbs from patients with complex regional pain syndrome Source: Pain. 2006;120:244-266. For everyone else: The implant basically felt like I had my arms pressing down on a giant vortexer. http://www.neutecgroup.com/wizard.htm?gclid=CPOcm-brjpECFSBMGgodImAXHQ has a fun animation. I had this sensation in mostly the right spots, it also ran down the back of my legs slightly and I felt it in my feet. I struggled with keeping the parathesia consistent. It would switch simply by the angle I had my head at, so the pain relief was spotty. Two of the programs left patches of white hot pain, worse pain than I had had ever felt before from the RSD. Obviously I didn't run those programs. My head a millimeter to one direction and I could barely feel the parathesia. I breathe in, all sensation is gone. Breathe out, it's back again but at an intolerable level because I moved my head to one side. Overall it helped relieve my pain and I didn't consciously know this. It obviously took away enough pain so I could sleep. Since it has been removed, I've gotten maybe 4 hours a day of sleep. I was severely distracted, because my mind was creating sound effects to go with the vibration sensation. With my deafness, I create voices when people talk to me so it fills in around what I do hear. This was completely exhausting to deal with and contributed to the amount I slept. The ability to sleep, though, was all implant. They've never had this side effect before, as I'm the only deaf patient they've had. We presume that as the sensation will fade into the background, so will the sound effects. It was odd to feel as if my body were being pounded by vibrations yet I was totally able to have fine motor control. The area of insertion caused significant pain; I fear for the permanent insertion. That will leave me hospitalized for two days with a fentanyl pump, but I've had insufficient pain control before. I think that's about it, go ahead and ask specific questions.

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January 21st, 2008

07:55 am - Things everyone should know It's been a very long time since I've written. I've been lying to pretty much all of you in real life. It hasn't been a lie in a bad way, but I just can't keep it up any longer. Most of you know about the implant. One of the things that happened was I was able to sleep for 10 or 12 solid hours at night. Prior to the accident, I routinely slept for 9 hours. Without the implant and after the accident, I average 4-5 hours. That is a huge sleep deficit for my brain. That is partially why I seem so tired sometimes when I'm around or I don't interact much. I'm completely and totally exhausted every day, for the last 6 or 7 years. When you ask how I am and I say fine or good, it's a complete fabrication. I hurt like hell. It feels like a second degree burn every minute of my life. Some days I can't change the clothing I slept in because I can't handle a new sensation on my arms. I can't shower, because the drops of water are a fiery hell. It is an enormous effort for me to get dressed and go to a function with crouchback. I usually am asleep in the car on the way, and I crash hard on the way home and sleep all the way home, because it was so hard to get ready. Ever notice how crouchback touches me? He only holds my hands and almost never puts his hands on my upper back, and NEVER touches my arms. Some days I have to tell him to just stop touching me period. It's a horrible thing to do to the one you love. I haven't read real books in months. I have absolutely no concentration because my brain is just thinking PAIN PAIN PAIN PAIN. So I watch TV or surf the net because I can just look at stuff, and not have to think about what I'm seeing. Many times I'm up for almost three days in a row because I just can't sleep, no matter how many sleeping drugs I take. So at night I watch whatever shit is on TV, and crouchback tolerates it, even though he sleeps worse with the TV on, because he knows that there's nothing else for me to do anymore. I know many of you really don't know much about me other than I'm crouchback's wife. Part of it is the deafness and not knowing what to do in a group. That's easy. Just approach me as an individual and talk to me. I can't break into a group that is already there, because I can never pick up on what is being said. I learned early to laugh when others do without any noticeable gap before I start laughing because faces are so easy to read. So people assume I get what is said, when that is so not true. It's tough to fit into a hearing world and unfortunately, fakery is part of being deaf amongst the hearing. You don't hear it? Just react like you did so you don't look like a stupid idiot standing there with a slack face. Part of it is that many times, I just don't have the energy to actually go somewhere. So I bow out of functions regularly. And honestly, no one bothers to come here because they feel it's too far. But hey, crouchback manages to get to see everyone where they live. It's the same distance. This may sound pissy, but it is true. Invites here get routinely turned down. Makes for a great feeling. So, currently, this is the real me. Angry at this fucking condition, upset that I can't function like I used to, isolated from people. All I manage to do all day is watch TV, let the dog out, and hope for something new to read online. It's a very lonely existence, to boot. I have a best friend, but she lives a couple hours away. Living a life that is full of nothing is the most horrible thing on earth. Also, I wanted to add that I have a true, strong personality underneath all this external stuff. One of crouchback's friends was very surprised, I believe, to find out that we had a shared love of a physical activity. It's very painful to go through life with people assuming that I'm an uninteresting person with nothing to to discuss except what my dog did that day.

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October 6th, 2007

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September 25th, 2007

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February 1st, 2007

05:44 pm - a birthday! It's crouchback's birthday! Send good wishes his way.

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September 18th, 2006

05:08 pm - mmm, duck blood soup My aunt and uncle had their 50th anniversary party this past weekend. They married young, my aunt was 18 I think? Had a baby at 19 or 20. So her first son is only 9 years younger than my mother. In contrast, my father was...33? when my brother was born, 34 when I was born, and I'm the youngest cousin. It was awesome. I love these cousins so very much. I don't think they realize how much I miss them. But, anyway, the first course was soup. Mushroom barley, chicken noodle, and duck blood. I want to know how many chose duck blood soup. ick. They had hershey bars wrapped with the names and dates and information about the aunt and uncle. I ate mine, and then when crouchback was off gaming, I sort of, um, had a bit of his. And now he'll find out. But hey, I gave him my pastel dinner mint because I hate those things. All chalky like Tums. The kids there were funny. My cousin David has one son, and he came up to me and asked my name. I told him, and said that his father is my cousin, and my father is his grandmother's brother. He said, "Ooooh" and walked off. I think he needed time to process that a bit. Current Mood: happy Current Music: music? what's that?

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September 17th, 2006

05:47 pm - Possible party? Anyone interested in coming over Oct 21 (I think that's the day, it's a saturday) for an indoor outdoor party? We have a fire pit thing that we can stuff with wood, plenty of seating around it if it's cold. I'm thinking of making some really good fried chicken and mac and cheese, and maybe roasting some chicken for those who don't want it fried (I only fry it a bit, then I finish it off baking). Plenty of other options for food, I just need to know. I'm also going to make a pinata filled with good candy so we can have fun bashing it. Maybe a vampire, since it's near Halloween. Since we're in the boonies, I was thinking maybe 2 pm eating time? It would be fantastic if people could come. For those afraid of dogs, we'll just put him in a room. That's the only animal in the house, we used to have cats but they all died, and the other four dogs died in a year. So, just one doggie who is low dander and average shedder (think more chihuahua in shedding, than beagle). I'll have crouchback spread the word. Oh, and dessert? S'mores on the fire, and homemade banana splits including homemade ice cream, chocolate sauce, and caramel sauce and fresh whipped cream. Storebought bananas, sorry. I can also make a strawberry or raspberry sauce if even one person wants it (which is, uh, me. so.) Current Mood: bouncy

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September 16th, 2006

10:32 pm - more family history This time, it's my father's side. His father died when he was 24, and my father was 3 or 4 so he never knew him. But, we have some nifty facts: 1. Born in East Prussia, then Konigsberg, now Kaliningrad 2. Wealthy, owning a factory (foundry or metalworking), owning much land in Lithuania, many acres or orchards. 3. College educated 4. Pilot 5. Accomplished musician, favorite instrument was the mandolin. 6. Member of the Lithuanian National Guard. Then the fun Germans came and invaded Lithuania and took the entire military into their program. My grandfather was forced into the SS. He and my grandmother were making plans to escape when he got sick and died. 10 years later, my grandmother managed to get her kids (she was pregant with the third when he died) over to the US on her own. Random trivia: my father weighs 9 pounds more than when he got out of Viet Nam. Not bad for a 66 year old man My brother is the spitting image of our grandfather. When my grandmother was dying, and confused in the nursing home, she kept on calling my brother by her first husband's name. Sad, really, but damn the resemblence. Current Mood: mellow

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August 9th, 2006

12:49 am My agility instructor made me cry. She's the only non-family member (meaning my husband and my parents) who said she'd come and visit me in the hospital when I had my surgery and she said she'd work my dog while I'm recovering too. I rarely get any offers of help for general things, and even fewer for the procedures and recoveries that I have so often. I really consider her a friend and not just an instructor. I couldn't run for agility last friday because of how much edema I had in my feet, so we actually had crouchback run sirwagsalot on the course. Turned out to be harder work than crouchback realized. I guess I made it look easy or something.

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August 3rd, 2006

03:12 am - Hard to write For some days I have sat and pondered how to write what I feels need writing. crouchback knows what this is about. It seems awful to me, and to him as well. But we're dealing with it. First, the scary part. I apparently have central sleep apnea. This is a more rare form of sleep apnea, and can be caused by a disfunction in the sleep area of the brain as well as a disfunction in the breathing center of the brain as you sleep. It can be triggered by a neurodegenerative disease, of which I have. We suspect that it is indeed the RSD that is causing it, and it is the reason I've had to go to the ER due to unconsciousness before. I don't get enough oxygen, I become cyanotic, they cannot wake me up, and basically I'm just intubated and given oxygen until I decide to wake up, any number of hours later. Central sleep apnea is life threatening, both because of the underlying cause behind it as well as the difficulty in making one mechanically breathe. On top of this, I suspect that if I go on a cpap/bipap machine that it will prevent crouchback from sleeping, since he's such a light sleeper. So, we'll be miserable from that on top of the proof that I can die anytime I go to sleep, pretty much. On top of this, the nerve blocks no longer work. I only have one choice left, and that is to have a spinal cord stimulator inserted into my spine, basically. First a temporary one is put in, to see where it goes and to adjust the strength and location. Then after a few days or weeks, I undergo a second procedure to put one in permanently. http://www.spineuniverse.com/displayarticle.php/article1980.html I will have a constant feeling of "pleasant tingling" on my spine. I love how they describe it as "pleasant". I can either get one that sticks out of my body to be recharged, which is smaller but hey, it sticks out of my back or my abdomen. I can get the larger one, which needs to be surgically removed every time the battery needs to be replaced, and this one can be as big as a credit card, as well as almost a quarter inch thick. So you'll be able to see and feel the shape under my skin. Either option is unattractive, I just need to figure out how unattractive I want to go. I have an old friend who died from this. His ex-wife wouldn't tell us exactly what he died of, and I suspect it was from just no longer breathing anymore. I'll ask a friend who got more information than I did about it, to see what exactly it was he died of. I hate how much this scares the people I love. I don't care that it scares me, I care that it scares the one person I love to death. Current Mood: discontent

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July 24th, 2006

10:29 am - *sniffle* Just now, we were talking about Swag. He always lies under crouchback's desk, even when he switched chairs from one that had no wheels to a wheeled one (more dangerous to run over doggie toes). Swag also used to love lying in that chair, and he was a bit upset that he can't manage the newer chair. Anyway, we were talking about why Swag still stays under crouchback's desk, and he reminded me that the Earl of Smell used to lie under my desk, for many years, so Swag grew up having to have another spot and once we got two desks in the new house (dear god we were so cramped in the old house) the Earl stayed under my feet while Swag went under crouchback's. I miss the Earl so incredibly much. equusregia, you know how big our "study" is? Well, in the old house imagine the same desk, a standard (double) bed, and a dog crate, with the room being 2 feet shorter. That was how crouchback and I lived after we married while this house was being built. Talk about us being cranky. Oh, and there was my tv stand, the same one that is in our current bedroom too. I had to move the dog crate daily to get to the closet to get my clothes. Swag was too young to not be crated when people weren't home. But SOMEONE started letting him sleep on the bed, and well, we're stuck now ;-) Current Mood: okay

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07:35 am - geeze louise I was reading on a messagea board about a kid who wants to refuse a second round of chemo for Hodgkin's disease. That reminded me of someone I used to date in college. When he was 17, he had a tumor on his hypothalamus. He had to go to the Mayo clinic for surgery to remove it, because no doctor in IL would attempt it. It was very risky surgery, and he had three strokes during the surgery. Woke up with half his body paralyzed, had to learn to walk and eat and talk and all that. However, it only took him a year to do it, so he went to college just a year behind the normal age. While he was in college, he came down with Hodgkin's. Every week after his chemo I'd call him to see if he was doing ok, and I'd either talk to his mother or to a very groggy Paolo. Turns out, I was the only friend not to desert him during this time. I really miss him. So, I googled for his name. Turns out, he's got a lawsuit going on for discrimination against his disability (he walks with a limp and his...right? left? hand doesn't work well at all. His right, I think, because he had to learn to write with his left. He's a fantastic social worker, and they hired two social workers that were non-disabled and far less qualified. This is what I hate about being disabled. I almost never worked during summers from school, I would go to dozens of places to hire and it's obvious I can't hear, and they didn't want to bother. And that's why I'm going to stay in the cozy and more accepting world of academia, because really I'm exhausted of trying to find a place elsewhere. Current Mood: moody

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05:04 am - trials and tribulations of a sleep talker Yesterday afternoon I was taking a nap on the couch in our bedroom. I often sleep with my eyes open, and I was talking, too. crouchback came in and thought I was talking to him, so he kissed me on the forehead, then on the lips, and I woke up and said "Why the FUCK did you wake me up?". Poor guy. I haven't been feeling well and thus not sleeping well so I've been taking lots of naps, because I've been getting about four hours of sleep a night, except for a few nights here and there when I've been so exhausted I slept for 12 hours in a row. Now, the dream I had last night. I was traveling somewhere with family. I want to say it was with my grandparents when they were much younger, and, well, when one of them was alive but I'm not sure. My brother was there too. Anyway, we stopped at this bizarre hotel that was full of taxidermied animals. Many many beavers everywhere. We get our rooms, and I am sharing a room with my brother, two beds. I take out my hearing aids (which I haven't worn since 98, so that's another weird thing) and put them on the nightstand. In the morning we're woken up by a ton of people in our room. Turns out, this hotel just books people in already used rooms and the new people get to kick out the existing people. So I gather my stuff but I can't find my hearing aids. And I was pissed, becuase they cost 4 grand altogether (which is true, if I had the money now to get hearing aids they'd be over 2 grand each and I'd need two of them, because of the severity of my loss. The worse the loss, the more expensive the aids). Anyway, I get dressed and try to find someone in charge to get my hearing aids back. I walk through the hotel and all the taxidermied animals (none are heads hanging on the wall, they are full animals on the ground) then I go outside for some reason to find someone. I walk around the back of the hotel and I'm in an industrial complex. I find it very warm to walk, because I'm apparently wearing leggings under jeans. I make my way through the industrial complex, ask for directions back to the hotel, and am told to turn left here. So I turn left after dodging many semi trucks, and I am walking through a grotto with running water, and that belongs to the hotel. I get back into the hotel, but after arguing with the people in the room and never finding anyone running the hotel, I give up and leave without my hearing aids. I bet the taxidermied stuff is from when I prepared museum specimens for the Field Museum. The hearing aids? I made a decision to just stop wearing them because they were a pain in the ass and didn't help all that much. The rest of it, I have not a clue. Current Mood: contemplative

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July 21st, 2006

01:57 pm - agility I've been taking sirwagsalot to agility since last fall. We had to stop during winter, it was way too cold since we use an outdoor course. Now that it's summer, we're up and jumping again. Agilty last week went fantastic. The week before last week was odd, he was very distracted and didn't really want to run the course. It could have been one of anything, but we chalked it up to his schedule being upset. Primarily, the second dog he was with was gone (he had surgery and was recouperating elsewhere, difficult place to heal), and his daily pattern was different because crouchback was home all week. We switched the lesson to friday mornings, since it's getting to be the hottest part of summer and it's easier on him to run at 9 am than at 1.30 pm. Anyway, he had a BLAST. He was confident enough to not mind the teeter much, though it's his most hated obstacle. It's very obvious that he loves the A frame, because he runs up and down it when we're crossing from one side of the course to another and I don't ask him to do it. It's a bit annoying, however, when we are trying to pull the course together and he thinks that we are going to the A frame from another obstacle and instead we're goin to a jump. We break down the course into sections, go through the section, make sure we iron out problems, then do another section, then link them, then do a third section and link those. Sometimes the obstacles are used more than once. So today, we started with jump-jump=jump-tire-tunnel, then added tire-tunnel-Aframe-table,then table-weaves-tire-tunnel-jump-jump-jump-dogwalk-chute. So when we did the last section, he assumed that after the tunnel we'd do the A frame instead of the jumps. I had to physically stand between him and the A frame before the jump so that he wouldn't automatically go to the A frame since he did do that before and the draw of the A frame is irresistable to him. But hey, he has fun, so he definitely doesn't get punished. Just has to start over again and gets the big praise when he listens instead of just plowing ahead. Current Mood: good

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May 25th, 2006

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May 23rd, 2006

10:10 pm - fucking staph Sunday morning I had some massive abcesses lanced from my armpit. It was so horribly painful I actually screamed and started to pass out. It takes a LOT for me to do that. So, it was packed and had a drain. I saw my doctor yesterday, he took the drain out and rebandaged it and gave me more information on the care. Today it started hurting again, and I have two more lumps, which means two more abcesses. On Sunday I had three of them, and these are in new places. So, calling the doctor and probably having to go and get them lanced again. The other issue I'm having is when I walk for any distance or do a bit of jogging for Swag's agility, my feet swell so badly. The edema is terribly painful becuase the skin is stretched, you can see the fluid jiggle as I walk. I have to let my birks out as far as they can go and they still don't fit, none of my shoes fit. It takes a solid week of diuretics and elevating my feet to get it to go away. So, I'm on a weird diet for a few weeks to get some weight off as fast as we possibly can. This really bothers me. I feel out of control with myself, I hate the limits this stuff puts on me, and I really struggle with dealing with all of this. I also have to deal with life outside my stupid little bubble, which I'd far rather deal with than the stuff that is happening me to me. And it's really hard being so isolated from any friends. I can go 6 months or more before I can see a friend. I hate that. I no longer have close relationships because of distance. Current Mood: gloomy

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